Hepatitis C: Post Treatment Issues Community
long term after effects post interferon
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This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints.

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long term after effects post interferon

My last interferon injection was 12 months ago. I feel tired, lethargic, my bones ache in the morning esp in my feet. I'm in bed asleep by 10-30....and now i've developed a fissula, a perenanal abcess (abscess). My doctor thinks it may be because since the interfeon my immune system is v.low to warding off infections.
Are these symptoms shared by others.
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Avatar_f_tn
this subject has come up several times recently, check the threads dated 12/14 by doubledose(SVRs, post tx....), 12/13 by Layla(post tx...) and 12/11 by Jonihs(for those who finished....). There might be some mention within other threads of post tx sides, but the threads mentioned might give you a good headstart of other svrs that have checked in and commented already, while you wait for answers here.
I had aches and sensitivities prior to tx, they got enhanced during tx and I don't expect them to completely go away post tx, but it would be nice if they did.
good luck to you
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Avatar_n_tn

Hi jem

I just finished my 3rd treatment with interferons.

The first time I did tx was for 6 months "i am 2B" and after I finished that tx I Had many side effects that lasted for almost 2 years. Pain from joints lack of energy, insomnia, brain fog and reduced cognitive process. But the one that contributed to most of this was interferon induced depression, I thought it was from the drugs that some how they had screed up my head. Once I started treatment for the depression everything came back into place and I felt great again. This recovery started about 5 months before I did this last tx.

Remember everyone reacts differently .

            God Bless.....

                TonyZ
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Avatar_n_tn
I am also a 2b,post Tx Aug. 24th, starting vl 500,000 cleared at 12 weeks and have remained clear. Why did you relapse? Any idea?
I am living with the fear that I too may relapse. My 6 month PCR is scheduled for Feb. 2005. Experienced multiple post-tx sx's but have tried to maintain a pos. outlook. Any insite would be greatly appreciated.
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Avatar_n_tn
I am 6 mo post tx, and still tired, fatigue easily, ringing in my ears is annoying, aches and pains, muscle spasms in neck, shoulders, & back.  My ANA (2nd one) came back positive also.  My PCP is sending me to a rhematologist. From what I have read it could be attributed to "old age/aging", lupus, autoimmune diseases such as autoimmune hepatitis, or drug induced lupus.
Tx also burnt out part of my thyroid so am on a med for that.
I went to a pain Dr and he encouraged me to take the milk thistle to rejuvinate/help heal my liver, and gave me "trigger point" injections, and a Vit B shot.  I feel REALLY good after that!  He also said the interferon/riba can have lasting affects up to a yr or TWO!? Good Lord, I hope most of you come out of Tx unscathed! (sp?)  Happy Trails to ya!  OHC
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Avatar_f_tn
Sorry  to hear that you are still experiencing such sides after being off of tx for so long.

I have only been post tx for 6 weeks now and experiencing so many sides that sometimes I wish I was still on the meds. (well maybe not) but some of the sides are worse than when I was on it. My hep doc told me to be tested for fibromyalgia but my PCP said not to worry about it. Bull! when I hurt more now than before it is time to do something.

I truly hope that your sides ease up soon. After all you go through on these meds we shouldn't have to deal with the horrible sides for so long afterwards
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Avatar_n_tn

I think if you asked a Hepatologist why I relapsed, he would  state that because I got the virus from a blood transplant, there was much more virus initially introduced into my blood stream. Then he would state the Biopsy results, stage 3 fibrosis which is Bridging fibrosis and grade 2 inflammation, he would also say that I had a high viral load. Some new data shows people being depressed during my treatment has been shown to lower a person response to tx by lowering the immune system.

The SVR Rate on the TX that I just finish, which was Pegasys  with a high Viral load and having bridging fibrosis is about, 74% SVR For Pegasys vs 58% SVR per Rebetron. So I have a good chance of beating it this time.

Now days people with genotype 2 have about an 82+% SVR rate.

                  TonyZ
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Avatar_n_tn
You should get tested for fibro. It seems that there are alot of us who developed it. Your pcp may not know enough about it.
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Thanks for your words. Seems like there's so much more support in the statas(I'm in london). The most positive thing i'm doing is psychoanalysis. Funny thing is tho...having had hcv for 20 years before doing anything about it, it's only post tx that i feel so old.am 43
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I talked with my pain doctor again today, she said I will probably be diagnosed with FM (fibromy)...not lupus.  My face does get that weird redness every evening though.  I hope you find out what is ailing you, I know I have had to keep getting checked cuz I too didnt get all better after stopping the meds on tx.
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But they really don't know much about FM either, and many researchers believe it may be due to the reaction to a virus  (HCV???, maybe), or a related autoimmune type reaction.  Just because they have a name for the set of symptoms (FM), does not mean that they have a clue about what it is!  For all we know, Lupus, and FM, and CFS, RA, etc, may ALL be related variations of an autoimmune process.  In our cases, the FM , which is common to HCV sufferers, could be a vaguely lupus-like affliction caused by the immune system's reaction to the virus, and later, to the interferon that we pound the virus with!

I am not sure that all the labels they put on the various syndromes, (lupus, FM, etc) do much to help us understand why and how they do what they do to us. Ask your doctor if FM is an autoimmune disease...and I bet you do not get a direct answer.
I do not think the answer is known.  We just know that we (most of us) HAVE it.
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Avatar_f_tn
has anyone else had a dry cough to deal with? and how long did it take to cease post treatment? to be honest its the only side effect ive had to deal with during the 6 months ive been taking it, now that im finished im wondering how long ill have to continue with the lozenges
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What is trigger point injections? Been on the treatment 2 tx for 6 mos and 1 tx for 18 mos and i hurt most of the time joint pn mostly and never sure about anything. feel like I need to work this out before they want to try another type of treatment on me. What do you advise?
CFLAGS
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Avatar_f_tn
I am 2 years status post treatment, 2nd year in a row with no trace in my blood.  Thank
God for that.  But-I still have joint pain every day, still have low energy and now have developed DIABETES.

I saw a rheumatologist as I had a positive rheumatoid factor.  She said I do not have rheumatoid arthritis, no damage to the joints.  Can't take nonsteroidals because I have damage to my liver.  When I ask for something for the pain, I get treated like a drug seeker.  

Kind of glad to know others have the same problem with joint pain but really tired of it.  Exercise does help with energy level but we should all ask our doctors about the long term effects of treatment and what we can do about it.  It really is kind of everywhere in my joints, does not stick to just one place.  If anyone gets any answers about this let me know.

***@****
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I'm 2.5 years post interferon/ribavirin tx and am exhausted and have joint pain. My tests are neg but there is a spot on my liver. No CA. I never realized that others felt this way also. Will I ever feel normal again???
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Hi Guys-I am just over 2 years post tx and still suffer side fx-dry mouth,fatigue,muscle/joint pains anxiety and depression-the usual suspects.I have recently had a prob getting my pain meds-only codeine-as am being stigmatised once more because of my ancient drug history.If I wanted a habit again I'd get a proper one...
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Hi Double Dose and all the contributors to this interesting forum. Thankyou for opening this dialogue about lingering effects post treatment. I am a 44 year old woman who had genotype1 for at least 20 years prior to diagnosis. I was fortunate enough to be treated with pegylated interferon and ribaviran combination therapy for 48 weeks in 2006/07. I had many side effects during treatment, but I have cleared the virus. The comments from all of you are mirroring my life. I have joint pain in my fingers, wrists, elbows, ankles, knees, hips. I have muscle aches and fatigue from any activity. I have depression. I have lower back pain. I don't sleep well. Some of these symptoms were present prior to tx, but have been exacerbated during and after the tx. My Dr is reluctant to correlate any of these symptoms to the tx. He is however sympathetic to the discomfort I am in, and has tested me for all sorts of causal possibilities.At least we know what it is not.I have approached the drug company for any post treatment information they could offer, and they sent me the product information that comes with the medication, but got uptight when I requested further ongoing research findings to the long term effects of interferon/ribaviran treatment. I am interested in the thoughts that despite having cleared the disease, the immune system may have already triggered a response that is having adverse effects on my system.I recognise that correlation does not mean cause, and I am grateful to have been cleared of the disease, but I am hoping for a improvement in my quality of life, and acknowledgment of my symptoms and their correlation to hep c and tx. Regards, Sandalwood.
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I'm 1 year post tx and still have joint pain and fatigue. Maybe a little depression, too. I can't say for sure that it is a result of the TX, but it seems that way. I do seem to be getting a little better each week, though, so I believe there is probability of full recovery.

Brent
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Dear God...  I just stopped treatment yesterday...

Type 2 here...  8 months treatment.  

Side effects during treatment have been muscle soreness, extreme fatigue, joint pain or tightness in hands and feet, the occasional nausea and debilitating insomnia - all of which of course add up to not being so bright and cheery aka depressed.

I was hoping that I would return to "normal" after treatments - but the history of this convo doesn't lend itself to one feeling hopeful for the side effects to go away.

Recently when complaining of the sleep deprivation, I was treated like a "drug seeker" as I have read happened with others - all further comments about it were totally disregarded.  I am choosing to switch doctors.  

I try to get sleep by using melatonin and sometimes Sleepinal.  Even using them, I cannot get a full restful sleep.  I do try to get a total of 8+ hours sleep, however fitful it may be.

My diet is exceptional - very little processed foods, NEVER any fast foods, and a very balanced diet of fruits,vegetables, simple and complex carbs, protein and fats   Liquids I drink water, herbal teas and the occasional black tea or "chai".  No coffee.  

I exercise very regularly with both weghts and cardio.

I googled, and found this convo, in a search for how long I would have to wait to feel normal...  God willing, I hope to break the trend of this forum and have no symptoms after sometime.  

I will follow this convo and provide further updates...

Thanks to all of you for sharing.  
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"I googled, and found this convo, in a search for how long I would have to wait to feel normal...  God willing, I hope to break the trend of this forum and have no symptoms after sometime."

Not sure what you mean by the trend but more people than not have little to no problems after completion of treatment.  It takes the body several months to come back, sometimes even longer or could be even less.  This thread is more the exception rather than the rule regarding recovery.   My guess is the fatigue will lift, you'll be feeling better and sleeping better within 3 months.  

Congratulations of finishing treatment and good luck.

Diamond_Lil  
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""This thread is more the exception rather than the rule regarding recovery.   My guess is the fatigue will lift, you'll be feeling better and sleeping better within 3 months."""

Oh, how I wish you were correct.  

Kungfoo dude good luck!!

Denise
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Denise,

I assume by your reply you are having some post treatment health issues. I'm very sorry to hear that.  I realize some people continue to suffer for many months or years after completing treatment. My hope is that in time things will improve for you and for all who continue to suffer.

The intent of my reply to Kungfuaddict was to let him know when he googled and this conversation popped up that it doesn't speak of the many who do recover within a shorter period of time and the testimony on this thread doesn't apply to everyone.

Diamond_Lil  

  
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475300_tn?1312426726
We are replying to a very old post  LOL.

I understand where you are coming from BUT .........2 years ago I finished TX and was under the impression that I would feel like "me" in 6ish months at most.  I didn't read on here or nobody current really mentioned long term effects.  I could not understand what MY problem was.

I think it is a disservice to tell someone that they should be up to par in 3 months JMHO

I would have treated even if I knew.  I do not have liver cancer and my liver is functioning as it should

Denise
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Hi, congratulations on your completion of tx. My Dr's and tx nurse told me between 3 months and 2 years before I feel better. I had severe symptoms during tx, my body may have a little longer to go before recovery. I am still hopeful of recovery, and am glad I took the tx. It sounds like you have a good grip of what is happening to your system, and are taking all the possible pro active responses. Be patient with your body and positive in your mindset. I guess you find a lot of negative stories on forums because all the good outcomes are getting on with life. For the rest of us, we need somewhere to vent our symptoms, frustrations with medical institutions, and get the support we need from others who have been through similar experiences. I personally feel unheard, and dismissed, and was relieved that others were experiencing similar things to me (not happy for anyones discomfort) as the medical professionals see me as a 'one of' reaction, and will not associate my current conditions with my recent past! Tx is a personal thing that has individual reactions and responses, I hope that you feel much better soon,
Sandalwood.
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I frequented this forum several years ago when I started the pegasys treatment. I believe it has been 5 years now since I did the 52 week protocol. Unfortunately, I did not sustain remission.. finding out 3 months after ending treatment. So, I ended up still having Hep C geno type 1 with a bunch of side effects from treatment that I still suffer from 5 years later.

I had to quit my job as a teacher and still struggle with my life’s purpose. The hardest thing for me to deal with is the cognitive problems, focus, memory and depression. Most of the aches and pains I have been able to control with Reiki, a Japanese form of relaxation and stress reduction. I highly recommend it.

It has been a crazy journey over the last 5 years and I never thought I would still be suffering side effects from drugs I took so long ago. If I could go back and change it I would never have tried the interferon. I was only at a stage 1. My doctor could of recommended for me to wait for something better...with more than a 50/50 chance to sustain remission. I had plenty of time, there should have been no hurry. But, he was doing a study . I was gullible and sure I would eradicate this disease from my system.

Before the treatment, my main symptom was fatigue. If only that was all I had to deal with now. I have learned not to trust doctors and to take my health in my own hands. Eat healthy, get rid of as many chemicals in the house and switch to more natural products (ie. cleaning, body care ect). I studied natural alternatives, essential oils, massage, yoga, meditation, Reiki. I finally quit taking my last and final medication… my anti depressant a few months ago. My doctor had a fit saying that all of the symptoms I am experiencing is because I have a chronic disease, hepc, and with chronic diseases you always have depression.  She said that the depression was causing my problems with memory, focus, concentration, pain…and everything else that it was not from the interferon. “Here, let  me give you another pill….don’t worry about the side effects it may create.”  
She also told me that none of her other patients who used interferon were dealing with theses issues so… in effect it made me feel like I was crazy… it was all in my head.

I was so frustrated that I decided to go to a natural path with a MD. She ran a series of blood work on me and found out that my adrenals are in crisis, my thyroid is not working properly, my liver is totally inflamed again, among several other problems….and guess what all of these conditions cause.. anxiety, depression, sleep related problems ect… So now I am taking supplements to put everything in balance and hopefully all will be better. If I would have listened to my OLD doctor, I would be taking another antidepressant while various systems of my body were suffering and shutting down.

I have been on disability through the school district I used to teach for , for the last 3 years. They are taking Social Security to court to get back some of the money they invested in me.SS already turned me down once , the first time they filed. I talked to their lawyer last week and she told me that she has represented many clients who treated with interferon who are suffering the same lingering side effects as I do. Thank you GOD for the validation…thank goodness I decided to get a second opinion instead of taking another “harmless little pill”


Moral to the story: be careful trusting doctors, get second opinions, research, research, research. There are a lot of tools out there to help you help yourself. Try to find one that heals the problem…not the symptom.

Love and Light to all of you,
berlynn
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Avatar_m_tn
Was treated in 2000 for hep c. Did the 48 week treatment. 10 years later I still suffer chronic fatigue and chronic pain especially in joints. Have gone to many doctors. The only one who has been honest with me is my family doctor who says, "Its that damn interferon they put in you, one of the main ingredients in polyethelene glycol (anti-freeze)"
I do not agree with Diamond in the sense that he thinks that those who are suffering after treatment are a small minority (if I'm inferring too much I apologize). I have talked with many who have been treated throughout U.S.
who are suffering.
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So amazing to read nearly the exact same story I could be telling!

WoW

Just WoW
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Avatar_f_tn
Well you learn something new everyday. I thankyou for your comments I too finished tx in 2000 after having taken three seperate years of it I had autoimmune hep c my whole body was a mess. the tx actually cleared up the vasculitis rash that was all over my legs and the added muscle aches were nothing to the joint pains I was suffering. The tx did mess big time with my mind though. Even now I'm still very vague forgetful and can't even remember what I said to a friend last week. I was wondering about that intervferon who would have thought I've had three years of anti=freeze going through my system its a wonder we are still here Once again thankyou and best wishes for your future
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thank you for all your validations.. i am post tx 12 years and 3a, cleared virius.. but suffer, fatigue- if i try to do anything out side of work and even with work ..exhaustion-  depression,  strange low body temps.. many of the things you all describe.. i have had a couple docs tell me it is common with treatment.. the we never get out "umph" back.. while the liver doc refuses to acknowledge it is from the interferon--  

i have been spinning my wheels for 6 years trying to find out what has happend to me.. it is good to be getting an answer- in the meantime i have been trying to follow Dr. Tietalbaums tx ideas for Chronic fatigue since  it seems my system is out of whack! - a little help.. but feel like cant hold out much longer--  working full time is taking away my life's energy ...  is it possible to get disablity and helped based on "post" treatment side effects-- which no one has any evidence for?

thanks
qkcam
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i suspose we can't sue them can we? i was in a study, and i'm quite sure i signed my life away...

not that a law suit would make our health better, but it might cover some of the $20,000 i have spent the past 2 years trying to get my life back..

it seems my immune functions are getting worse.. as i get older I just turned 43 and had a 101 fever on my birthday..  6 fevers in 8 months...  
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979080_tn?1323437239
thank you guys for posting

i have not been exposed to interferon yet and find it very disturbing

there are 2 different realities out there and yet thousands of thousands

of people have done this treatment and still somehow there is no consensus

on the side effects during and after of Peg/Rib.

here is what my hepatologist told me:

How are the average side effects for 48wks tx percentage wise you see out of 100 people?
  
1) no side effects  5%
2) little side effects 15%
3) moderate side effects 70%
4) severe side effects 10%
5) irreversable permanent side effects <1%

basically it comes down to 2 approaches:

1) Only treat if you absolutely have to when your back is against the wall
   (high enzymes, VL , symptoms ect....)

2) Treat early for better SVR

if there were another way nobody would do this treatment that is certain.

Any advice for an INF-virgin ?





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Yeah, the first is special for all of us.
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basically it comes down to 2 approaches:

1) Only treat if you absolutely have to when your back is against the wall
   (high enzymes, VL , symptoms ect....)

2) Treat early for better SVR

if there were another way nobody would do this treatment that is certain.

Any advice for an INF-virgin ?
______________________________________________________________________

Viral load and liver enzymes fluctuate constantly so it does not come down to that.  Liver damage should be one of the primary concerns when considering treatment unless someone just wants to treat and attempt to eradicate the virus regardless of liver stage. Additionally, treatment takes a commitment and life circumstances should be taken into consideration as in whether a particular time in someone's life is suitable for treatment due to the commitment and sacrifices involved.

Many studies confirm the less damage, the better odds of acheiving SVR.




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Avatar_f_tn
My advice is to get a biopsy.  If you have little or no damage, as determined via biopsy, then roll the dice.  If you have more than minor damage, I think you need to give serious consideration to treating with SOC.

I know you would like better odds of success, and would like some assurnace that treatment will not cause you a lot of permanent damage.  We would all like that.  In the end all you can do is search your heart.  The answer is within you.

Best of luck, whatever you decide.


jd
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979080_tn?1323437239
COGNITIVE DAMAGE , is what I am worried about not flu like symptoms......

The hepatologists tell me to get problems with that on tx you would have to have

a prediposition for depression , somehow I don`t quite buy that from what I see

people experiencing.
.

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I had no cognitive problems, used no AD's but experienced irritability which I attributed to sleep deprivation on my long journey or 72 wks with interferon and ribavirin that most don't have to do.  I could of used a sleep aid, but chose not to.  

It's all part of the INDIVIDUAL experience Bali.  There are no certainties when it comes treatment.  Even if your doctor or a member this forum gave you a sworn statement you would not experience a particular side effect it would mean nothing because they are not you.
We are given a broad base of side effects that may happen yet many are not effected and their treatment is tolerable, they SVR and live a normal life.  Some become incapcitated and experience years of post treatment side effects they never expected.
In my opinion, you are overthinking the entire process to the point nothing makes sense to you because you have become so apprehensive due to conflicting test results and tenative side effects and what others have experienced.
Treatment is a commitment and it's one of those decisions that will matter ten years from now regardless of what may or may not happen during or after treatment.  We know the basics of what to expect but there are no exacts.

I don't know why you find that so hard to understand or accept.

Trinity


  
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476246_tn?1310999221
I don't buy that either.

I never had depression in my life, even though I could have had plenty of reasons  many times. I still have cognitive problems.

The only time in my life was when I got clinical depression 2 weeks into tx, which was alleviated with a low dose of Celexa. I got off it about 2 weeks post tx.

I do have cognitive issues post tx. I am constantly working on it with 'brain games' and am taking cognitive supplements. I can see that I am making progress. Patience is a virtue :-)

The thing is that we are not the only ones going through this. A lot of cancer patients have the same problem after chemo. Since Interferon treatment is a chemo like treatment, I understand that it can have the same long lasting effects.

One thing is that one can train one's brain, it might take a while....

A couple of months ago I felt almost lost with this, until I talked to a good friend of mine who is a cancer survivor. She had lots of issues, but she is on top again after some years. She has been training her brain, doing marshal arts and is taking good supplements. Her hubby had hep c and was treated by a great doc in NYC and was also seeing Zhang. They speak very highly of him, too. He has been SVR for 6 years or so now.

What I'm trying to say is that I believe that it is possible to counter act the sides. Of course everyone is different and some people might not have any at all and others will never get rid of them.

I would not back off treatment because of this. But of course if one has time, it might be a smarter choice to wait.

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I don't think you will "buy" any fact or advice that points you toward treatment.  You have already made your decision, haven't you?  So what is the point of further discussion?
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979080_tn?1323437239
thank you for your honesty. you sound like my GP he wants me to wait

but he is not a specialist either.

Every drug on the planet has possible side effects but they are usually rare so

you do not think about it much. A simple allergy medication can cause cataracts

or whatever it is but we take it without hesitation and do not run to the eye doctor

because of it.

I find the term brain fog is used an awful lot and not something rare.

It is a sensitive subject I understand that but right now FEEL like

I am risking brain damage for 50% chance of clearing the virus.

I can deal with flu like symptoms, fatique,I already get migraines, sleep problems

ect..... yes that is all doable.

Cognitive damage is a different animal.

It is causing me major hesitation to jump into tx.




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979080_tn?1323437239
not true !

I actually learned tons from the advice of others. So much that I am well prepared

to start immediately. Like tomorrow. Meds are waiting for pick up.

I did everything from teaching class to baseline bloods.

I have serious issues with cognitive damage which puts the breaks on

everytime I think about it.

My job and my life require mental fitness. I have responsibilities in 3 different

countries in 3 different languages the thought of brain damage call it fog or whatever

is a huge factor for me. My brother  for the past 30 years has mental problems

and is on medication. I have an idea what depression,paranoia ect.... can do to

a person. Never mind flu like symptoms that`s a walk in the park compared to

metal disorders.

I am fighting as hard as I can to get the best possible scenario out of my individual

situation.



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Avatar_f_tn
I agree with Jd, and you are looking for answers that no one can give you because as you said "best possible scenario out of my individual situation."  Individual being the operative word.  

Short of an epiphany there's nothing more to be said.  
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The spectre of permanent cognitive damage is certainly enough to make one pause.  I too have a profession that requires mental fitness.  

There are many people on the forum who experience brain fog during treatment, but the kind of permanent damage you are contemplating is just not at all common. As for depression, lots of people get through treatment without problems with depression (I am one) and most who do suffer depression find relief with ADs, and are able to stop the ADs when treatment is completed.  

By contrast, I have lost friends to liver disease and they suffered cognitive damage along the way, together with other misery.  Its a horrible death.

Do I seem paranoid, depressed, or significantly cognitively impaired to you?  Do other members of the forum who post on your threads strike you as cognitively impaired?  I'm a few years older than I was when I started SOC, and people my age who haven't taken these meds or any other chemo complain that their memories are going the way of all flesh too.  But I can still manage to string together coherent thoughts and if you think otherwise well just let me get you in a courtroom on a witness stand and then we'll discuss how much brain damage I have sustained.

As I said before, you must look to your heart.  You will know what to do.  Its your liver, and your brain so who am I to tell you what to do.  If you were my loved-one, I would want you to get a biopsy, and let that inform your decision.  

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Just to throw a curve ball in to this conversation - I also experienced brain fog during tx however surprisingly enough I found that doing mental activities (including the mental gymnastics of my job) HELPED me get through treatment. I also read like a fiend throughout the whole 48 weeks and now, 12 months since finishing tx, my mind is exacly the same as it was prior to tx.  No, wait, that is incorrect.  I am actually much more mentally fit as I no longer suffer from the midafternoon exhaustion I used to.

The way 'brain fog' affected me was more in the manner of my very short term memory, eg forgetting what I went to get from the bedroom, or sometimes taking the left hand corridor when I really wanted to go down the right hand corridor.  All things that I used to do PRIOR to tx but do less often POST tx. I think I was more concious of doing those silly things because I was so hypersensitive to any changes in my behaviour and I was always "looking" for symptoms and side effects...

"Brain fog" is not "brain damage"!!

It is sad to hear of people that have sufferred long term side effects of IFN and I certainly don't want to say that those side effects are not real for them...but I do wonder whether alot of the things we sufferr from are part of a natural aging proces, or perhaps vitamin and mineral defficiencies.  There are all manner of reasons why we suffer the things we suffer.  I went menopause when I was treating and I blamed a lot of my "symptoms" on the tx drugs and I was definately concerned when some of my "symptoms" did not go away once I stopped the meds.

I decided to look into my diet and ensure I was getting adequate essential vitamins and minerals, including the omegas and selenium as it is documented that tx leaves us depleted in those essentials. I also started taking natural hormones and the difference was phenomenal!! Things started to really improve.  So I am saying what many people say here, not all the symptoms/ailments we suffer post tx can be blamed on tx.

Bali, I truly think that deciding NOT to do treatment because you are AFRAID of what MIGHT happen is doing yourself a disservice.  If you take it day by day you will be amazed how quickly it can go and often times it is much less worse than your imagination has led you to believe and, truly, thinking you are going to become brain damaged is an example of how vivid your imagination is...

And you know you can always stop if it isn't working for you, whether that be in terms of viral load OR your perceived mental health and acuity.  You never know you might become UND and then go on to acheive SVR and have NO side effects.

Imagination works both ways you know, and the power of the mind is immense!

Whether you think you can or you think you can't, either way you are right...
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thank you

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good thoughts epiphny- i have really been trying to work with diet and suppliments - but as far as the aging stuff.. i know people 20  years my senior that run circles around me.
I have just started on bio idential hormones and t-3   it seemed to help..

also i find myself struggling to get through the work day--  and i seem to be chemically sensitive.      sometimes i am so tired by the end of the day i have a hard time taking care of myself with the food...  

i want to get better and i keep pushing, i keep trying to exercise and do the right things, only to get set back with exhaustion then i can't think straight.    heck.. maybe i never could think straight.      


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My heart goes out to you as you are in a real quandry. We are all unique and the effects of the treatment can be unique as well. At the time of my first treatment very little was known about Interferon and certainly there was not the wealth of information that we now have at our fingertips. Unfortunately, I had a really bad time during treatment ith brain functioning. I could not watch a movie all the way through without losing the plot and wondering what happened. I would hear things and see things that weren't there, I couldn't speak. Oh I thought about everything but I couldn't speak out what I wanted to say it was wierd like I wasn't there. I couldn't tell anyone how I felt it was only afterwards that I realised what I had been through. However, I am free of the dreaded virus and although my memory isn't what it should be perhaps you should at least try you just might be one of the lucky ones who have no such side effects. apparently the particuar effects I had are very rare. I wish you all the best
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This is why I don't go through treatment.  The cure (for me) is worse than the disease.
Genotype 1, have had it for 30 years.  
I stopped drinking 10 years ago before I even knew I had the virus.  I'm under the care of a hepatologist; get an annual blood test and a biopsy every five years.  Fortunately, I got into weight training a couple years after I was infected in 1981.  I eat well, train hard, and am still Stage one.  I'm very careful about medications and I don't treat my body like a garbage can by eating a lot of crap.  

I'm 54, female (post menapause), and powerlift for a hobby.  I don't compete because of the disease (and some other minor reasons).
I'm watching the reseach for new treatments; the VX-950 looks promising, but I won't do anything that reqiures Interferon.  I'll wait.


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I just stumbled upon this site.  I was afraid to do treatment too because of the side effects.  I never did the treatment and ended up with liver failure, and had a liver transplant.  I had Hep C for 25 years before my transplant, and my viral load was always very low.  I am genotype 1a.  I have done the treatment now since my transplant...52 weeks, and am clear of the virus.  I didn't have many side effects during treatment except anemia, and my head got foggy, but that has gotton better now.  I had a foggy head for years from the Hep C anyway.  It's been 4 months since I finished treatment.  I'm still tired, but my hepatologist thinks I should feel like running a marathon because all of my blood tests are back to normal.  

I just wanted to tell people what can happen if treatment isn't done.  Everyone is different, though, and you never know how the disease or the treatment will effect you.
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Congratulations!!!!
Your story is very inspiring - and encouraging!
Stay well Penny,
Mike
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I hope you recover fully Penny.  Thank you for sharing your story.  Many of us feel  treatment should be seriously considered if advanced fibrosis is present because if we do not eradicate the virus or postpone treatment too long the end result can be cirrhosis and ultimately liver transplant.  I did not SVR after a most unpleasant and lengthy treatment with SOC but I will be one of the first ones in line when the PI's hit the market.
I rather deal with this disease on the front end than the back end despite any short term or long term side effects.

Trinity
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i want to know whether to take interferon or not my pcr 600000 normal liver enzymes  liver biopsy 4/6 plz tell me take it or not.
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dont take it. wait for new drugs next year
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Well So it looks like doctors don´t care about us at all here in Portugal they seem to look at numbers instead of people and I guess it´s always like that everywhere. Thing is I´m getting so furious: I was treated for hcv 1a 5 years ago and it worked I´m still fine but my 1st concern was I couldn´t sleep and I can´t sleep, I can´t gain weight, I´m loosing muscular mass and bone, I get tired, I feel no will, I don´t want anything, I´m tired, and all that you talked about. They (doctors) say I´m fine, well I´m not! They say the causes are sth else, well they can not be! And the thing is all these symptoms have been getting worse instead of better. My teeth are a disgrace I get infections easily, so I reaaly am getting very depressed and worried because I thing I can´t trust any doctor at all.Thanks for sharing and reading
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I finished 48-week treatment 15 months ago. I got infected in 1973 at a tender age of 18, and carried that virus (genotype 1) for 35 years before finding out at the age of 52. I was sick most of my adult life without knowing it. Before treatment my viral load was high - over 2.5 million, and ALT 360. Did not do biopsy as it will give me no meaningful information. I am SVR now. Let me tell you my story for the sake of those who still live with this insidious enemy.

I never knew i was sick, because of a very slow onslaught of this disease, but now with hindsight i can see i was really sick, and so are all those who are infected irrespective of their viral load or liver damage. Liver damage is only a part of the whole picture. Any chronic condition will systematically imbalance the entire body affecting virtually every organ and every system of the body. It is a deadly disease and time is not on our side. The body does not get stronger with time, and virus will eventually catch up with everyone. If it doesn't destroy your liver, it will destroy your immunity, your kidneys, your blood, your brain, your peripheral nervous system, your muscles, joints, or wherever your weak spot is. The immune system, in order to keep the virus at bay, goes in overdrive, triggering the host of autoimmune processes, which start either as slight allergic irritations or more sinister and hidden  autominune syndroms (syndromes), which are asymptomatic at first, yet deadly in the end. If your liver does not fail you, your kidneys will. If your kidneys do not fail, limphoma will finish you. Doctors will often tell you that many people live with that virus, and in the end die from some "unrelated" cause such as heart attack, cancer or a stroke. They say that because they are 'specialists'. A liver specialist is concerned only with liver, hemathologist only with blood, urologist with urinary tract etc. They see a fragment, not the whole picture. If they see the whole picture then they will see that no one infected with hepatitis c dies from 'unrelated' cause.

Whoever is infected with that virus will definitely die from it, either because his liver will eventually fail, or because of some indirect effect this chronic infection has on other body systems, primarily on immune system. Any long term infection has a 'domino effect' that will affect all parts of the body. All systems of the body interact with each other. There is a feedback loop between all of them. It is immposible to maintain health of other organs if function of any one is impaired. Consequently, to speak that a person remains relatively healthy while being infected with this virus is far from the truth. Things are boiling down there invisible to 'specialists', and when symptoms of those other 'unrelated' diseases start to manifest, the immune or any other system is probably beyond repair.

Once again, the immune system is able to conterbalance the virus, only by going in overdrive, triggering more severe autoimmune syndroms (syndromes) as the disease progresses, which will have progressivelly larger effect on other organs and tissues of the body. Your limphatic system will suffer, your immunity in general will become abnormal, your muscular and sceletal tissues will become affected, your endocrine system will mulfunction (pituitary, adrenal, thyroid) etc.etc. You will develop lupus, fybromialgia, Chron's, asthma, thrombocytopenia, cancer or god knows what. There are no clinical ways to monitor this subtle changes. To rely only on ALT levels or levels of fybrosys in the liver, when determining the probable outcomes of disease, is the way of the liver specialist, who knows very little about the rest of the body. The fact is that hepatis c should ALWAYS be treated - the sooner the better, in order to prevent all kind of collateral life-threatening damage.

Obvioiusly, i cannot offer the proof to any of that, but it is all a common sense, and i believe should be at least adopted as a theory with which it would be prudent to work. In the end, someone who has lived with it his entire life should know better then someone who has only read about it from the books. I experienced all those symptoms, which any doctor would describe as 'unrelated', or as 'asympthomatic'. They are neither 'unrelated' nor 'unsympthomatic'. Those are clearly the symptoms of an abnormal immunity, and its effects on the various parts of the body, caused by some chronic viral infection such as hepatitis c infection. In the course of the disease there were clear indications of the worsening of the condition, which manifested in stepping up of the various symptoms. There were symptoms that came gradually such as headaches, bouts of fever attributed to 'flue', occasional skin irritations, allergies, then came irritability, depression, joint problems, tingling sensation under the skin (neuropathy), muscle cramps, fatigue, slight foggishness or mental overactivity, stomach problems, kidney problems, even boils and swolen lymph nodes. Naturally, since they would come and go, or remain at low intensity, i would dismiss them as signs of aging or as 'one of those things'. Only now in the absence of the virus, i can regognize them for what they were - signs of sickness, not aging or 'one of those things'. We do not recognize them because they come so slowly, but once free of virus, when vigour and energy return, we can see quite clearly how sick we were, and how low our quality of life really was. In my mind, there is absolutely no doubt that hepatitis should be treated at any cost, because it is a vicious battle between us and the virus, in which virus will surely win unless we do something about it. The fact is, unless we kill the virus, it will kill us. In my mind there is no justification in delaying the treatment. Liver findings alone are quite irrelevant, because if my liver does not give up, something else will, not to mention the quality of life. We get used to be sick, and do not even notice how low our energies and zest for life have droped over time. Only when virus is eradicated and energy returns, could we truly see what we were missing in terms of quality of life.

....
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(part 2 because of character limitation)
..............................
But nothing comes for free in this world, as we know too well. If we think that 48-week treatment will instantly cure us, we are not being realistic. We were sick for decades, our body has been out of tune for a very long time. The blood works due to intereferon/ribavarin might return to normal within weeks, but not in your dreams will any of us come back to 'normal'  that quick. Interferon itself mimicks what our immune system does naturally. It makes things even worse before it makes them better. It aggravates any automimmune disorders that hepatatis c already started. Any person with a chronic condition such as hep c already has abnormal levels of cytokines such as interferon, as well as abnormal level (or greater sensitivity) of corticosteroids + other stress hormones secreted by adrenal and other glands of endocrine system. This means that not only the immune system is out of whack but the entire cellular metabolism, which is the reason why chronic hep c will lead to diabetes type 2. Interferon will activate all patent and latent autoimmune and metabolic conditions, but it is important to understand that those will happen anyway at some future date due to the progression of the disease. We only hasten the inevitable in order to reach the critical mass needed to kill the virus. If you have seen anyone dying from a liver failure, or even any other chronic condition such as cancer, then you will know what i am talking about. All of this waits for us, only without a benefit of a cure, then why blame interferon. It is a necessery evil in this war where only one can win - us or the virus. Sure, side effects are attrocious. It is a very toxic drug, but read what others say about corticosteroids, for example. We are not alone in this. I experienced evey side effect in the book, and even some that are not in the book, my hemoglobin fell in three weeks from 17 to 9, my ANC fell from over 5.0 to 0.6, my platelets dropped from 130 to 65, i had to inject Neupogen, in order to continue, which has its own side effects, i wanted to cry, i was on the brink of giving up, could not sleep, became irritable and agressive, then the depression sets in, all became sensless and bleak, even thought that death would be liberation from all this pain and misery, was counting hours and days. I even gave up the hope that it will cure me, secretly i hoped that after 3 months the drop in the viral load would be less then two logs, so that i can stop with all this torture. I felt i would never be the same again after this ordeal. I could feel that this drug is changing me on some irreversible biological level and no matter whether i continue or not, i will never be the same again.

As it turned, i was right. As Epiphny mentioned above, mind is powerful beyond our wildest imagination. Whatever we decide, is right for us. We should never underestimate the power of the mind because ultimately it is greater power then anything biological or physical. It is the mind that creates physical things, not vice versa, so we should be very careful what we desire, and where we put our faith. It is equally important not to enertain false hopes and engage in denials. It is when we are most desperate, and when we give all hope that mirracles occur. So, with the will and determination, nothing is impossible. If we really want to overcome this evil, and are prepared to endure, we must win in the end. I have no doubt about it at all

......

I hope that this might help all those going through the pain of reconvalescense. No one told us about after effects so when they happen we tend to overreact, thinking it is something abnormal or unusual happening only to us. It is quite normal. We were sick for a very long time, and it takes time for the body to readjust. Body learnt to live with virus; it adapted over a long period of time, and it will also take some time for the body to spiral down and adapt to the new reality. Doctors have insufficient experience with after effect of chronic diseases, because by definition they are incurable. We are lucky that hepatitis c is one of very few, if not the only chronic viral disease that IS CURABLE, but we cannot expect that immediately after the cessation of therapy everything will return back to normal. Virus might be gone but the damage done by a long chronic inflamation (inflammation) is still there. The severity of this after effects is the true measure of how sick we really were. That is why this after effects are much stronger in those who SVR then in those who did not. And what do we mean by a 'normal' state? Pre-treatment state was not a 'normal' state; pre-infection was a normal state, and many of us were sick for so long that we do not even recall how that felt. If we do not feel the way we felt before treatment that is good, is it not? It means we are cured. This brain fog, depression, joint aches and all other symptoms will almost all resolve, but even if some remnants of autoimmune or metabolic disorders remain, it is worth the victory.

It is always good to remember that mind and matter are interconnected and that just as biological changes affect the state of the mind, the state of the mind can also change the biology. If we have faith and persist in face of apparent difficulty we can never fail. What does not break you, makes you stronger, which means that whoever survives the ordeal of this disease has gained in strength - mental and biological. 15 months after the therapy and i still have some remaining issues, but at the same time i have strength and vigour i did not have since i was 18, when i got sick. I am trully thankful not only for the cure but also for the disease, because if it was not for the disease there would be no cure either. The whole experience made me much stronger and wiser then i was ever before. Cure healed my body but the disease healed my spirit, so to speak. Everything in life is a blessing, even the most dreadful thing is just an opportunity.

Firstly, we should count our blessings for hep c is the only curable chronic condition. If there is even 10% chance of a cure then theoretically, with right attitude, dosage and adjustment in other parameters, everyone can be cured. Interferon has 50% chance (genotype 1). With the right regimen and personal will everyone can overcome it. We should know what the other alternative is. But we should also know that getting rid of the virus is only 1/2 of the job done. The other 1/2 is to readjust to a healthy state, which is often more difficult and longer of the two. I believe it is much easier to overcome this after-therapy blues if we are foreworned and expect it as a natural course of healing then if it hits us out of a blue. Doctors have no knowledge about it and cannot help. In this period it is better to avoid doctors and all medication as they can make things rather worst by interfering in this natural healing process. Doctors have done what they could of done by prescribing interfeon. They can do no more. They are not qualified to deal with the second part, nor can they offer any medication for it. Only ourselves can help ourselves by remaining strong and in full faith that it is healing taking its natural course. If we understand this then eventually we will emerge out of it renewed in health and strength. Alternatively, if we resist it by seeking medical help for non-medical condition, we will only build up inner stress and unnecessery prolong the entire process of healing.
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Part 3 of the above
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I heard many of us complaining that we are never the same again after this drug. Exactly - we are not the same, at least those who attained SVR are not. We got so used to being sick that we cannot tolerate health any more. Those who did not achieve SVR are different story, because they continue experiencing various autoimmine and metabolic syndromes, but those symptoms will happen anyway due to viral activity. Interferon only aggravated them for a time.

I also hoped that ordeal was over when i injected the last dosage of interferon and took the last pill. Alas, was i naive. If it was that simple! It was as if one torture ended, only for another one to take its place. I felt great for about 4 weeks as my bloodwork improved but then it all turned upside down. Suddenly great irritation, anxiety and depression set in. Could not sleep at all. I never had brain fog or cognitive problems during the treatment but now i was hardly functioning; was never sure whether i did right or wrong thing, things slept out of my mind, always confused, unsure, even my balance was impaired. My head was splitting with pain 24/7, my eyes were swollen and painful, developed high eye preassure, pain in the ears, throat, stomach. Oddly, joint and muscular pains become absent during the treatment, but now they came back with the revenge. Prior to treatment i had moderate pain mainly in knees and elbows, but now my every joint was aching from foot to the last vertebrae to pelvis. My facial muscles, muscles in upper arms, hands and legs would twitch and tremble, had pins and needles all over the body, pain under nails, numbness in my wrists, pain in the foot (all signs of neuropathy). To fall asleep was a struggle, i would jerk every time when sleep came to my body, and even if i did fall asleep, i would wake up shortly after. One morning i opened my eyes with the room spinning around me - and that was 7 months after therapy - and at that time i was also diagnosed with autoimmune thrombocytopenia (platelets between 80 to 100). But despite all of that i could feel energy and strength returning, and that was a sure sign that virus was gone for good despite all this uncomfortable symptoms.

I hope that this might help all those going through the pain of reconvalescense. No one told us about after effects so when they happen we tend to overreact, thinking it is something abnormal or unusual happening only to us. It is quite normal. We were sick for a very long time, and it takes time for the body to readjust. Body learnt to live with virus; it adapted over a long period of time, and it will also take some time for the body to spiral down and adapt to the new reality. Doctors have insufficient experience with after effect of chronic diseases, because by definition they are incurable. We are lucky that hepatitis c is one of very few, if not the only chronic viral disease that IS CURABLE, but we cannot expect that immediately after the cessation of therapy everything will return back to normal. Virus might be gone but the damage done by a long chronic inflamation (inflammation) is still there. The severity of this after effects is the true measure of how sick we really were. That is why this after effects are much stronger in those who SVR then in those who did not. And what do we mean by a 'normal' state? Pre-treatment state was not a 'normal' state; pre-infection was a normal state, and many of us were sick for so long that we do not even recall how that felt. If we do not feel the way we felt before treatment that is good, is it not? It means we are cured. This brain fog, depression, joint aches and all other symptoms will almost all resolve, but even if some remnants of autoimmune or metabolic disorders remain, it is worth the victory.

It is always good to remember that mind and matter are interconnected and that just as biological changes affect the state of the mind, the state of the mind can also change the biology. If we have faith and persist in face of apparent difficulty we can never fail. What does not break you, makes you stronger, which means that whoever survives the ordeal of this disease has gained in strength - mental and biological. 15 months after the therapy and i still have some remaining issues, but at the same time i have strength and vigour i did not have since i was 18, when i got sick. I am trully thankful not only for the cure but also for the disease, because if it was not for the disease there would be no cure either. The whole experience made me much stronger and wiser then i was ever before. Cure healed my body but the disease healed my spirit, so to speak. Everything in life is a blessing, even the most dreadful thing is just an opportunity.

Firstly, we should count our blessings for hep c is the only curable chronic condition. If there is even 10% chance of a cure then theoretically, with right attitude, dosage and adjustment in other parameters, everyone can be cured. Interferon has 50% chance (genotype 1). With the right regimen and personal will everyone can overcome it. We should know what the other alternative is. But we should also know that getting rid of the virus is only 1/2 of the job done. The other 1/2 is to readjust to a healthy state, which is often more difficult and longer of the two. I believe it is much easier to overcome this after-therapy blues if we are foreworned and expect it as a natural course of healing then if it hits us out of a blue. Doctors have no knowledge about it and cannot help. In this period it is better to avoid doctors and all medication as they can make things rather worst by interfering in this natural healing process. Doctors have done what they could of done by prescribing interfeon. They can do no more. They are not qualified to deal with the second part, nor can they offer any medication for it. Only ourselves can help ourselves by remaining strong and in full faith that it is healing taking its natural course. If we understand this then eventually we will emerge out of it renewed in health and strength. Alternatively, if we resist it by seeking medical help for non-medical condition, we will only build up inner stress and unnecessery prolong the entire process of healing.

I wish every one out there a speedy recovery.
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Thank you for posting this.  I too am 15 months post tx and SVR.  I too was sick for over 25 years with undiagnosed HCV.  You are so right about HCV affecting the whole body.  My supercharged immune system destroyed my pancreas and I developed Latent Autoimmune Diabetes (similair to Type 1).  Because of the prolonged HCV infection I will be insulin dependent for the rest of my life.

You are also right about the prolonged adjustment after SVR.  I don't feel ill anymore but like you, I experienced intense anxiety, depression and hostility towards others which is opposite my natural personality.  I was resigned to the fact that I would never be "myself" again and I may not be, but hopefully as time goes on I can adjust to the person I've become.

Thanks again for your post --

Kittyface
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I did treatment in 2001 for 6 months, and cleared the virus.  During treatment I spent most of my time in bed because I was so sick.  Now the year is 2010, my body has never recovered.  I have no energy, little interest in doing things, no travel, need tons of sleep, sometimes lose my ability to walk.
I used to be a high-functioning, type A, personality.  That is all gone.  I have been to see many doctors to see if I could get help.  I have taken anti-depressants and more supplements than you could imagine.
I don't know what, but something happened 9 years ago when I took Peg-Intron Combo which radically changed my life, not in a good way.
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I had no problems  during 2 TX`s and almost one year post still no problems,there are lots like me,dont know the exact %
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I read one of your earlier post with great interest.  I am genotype 1a.  I went through 22 weeks of combo therapy in 2004.  I ended up in the hospital with pneumonia, so tx was discontinued.  In April, 2006, I began a second attempt at tx, (stupid on my part because the damage had already been done, and the second tx made things much worse).

I made it through week 44 on the second go round and again, was hospitalized for pneumonia.  I have been off the combo meds for over 3 years and my body and brain are still falling apart.  Doctors only increase my anxiety and frustration levels.  My teeth started breaking apart within months of the 1st round of tx.  And today.... I have 2 and 1/2 teeth remaining in my mouth.  And those are about to go.  Hearing and vision problems.  Almost constant fever of 103.  I've lost control of my bowel and bladder functions, and most frustrating is my memory loss, confusion and depression.  3 years and no improvement.  Only continued deterioration.

I have been unable to find any studies that "officially" state that Interferon causes long term cognitive problems.  I used to work in radio and I played tennis at least 5 days a week.  Today, if I were to play tennis, I would have a heart attack within minutes.  Today, my memory loss is worse than yesterday.  I don't remember the point I wanted to make, but I do feel better that I'm not alone in my experience.  I wish you all the very best and thank you!

Jeff
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I found your info on the net and did so because I too just finished treatment for type 2,  6 months.  Evidently the easiest to cure.  It was as you said hell and I hope it does not return.
A good support group was essential.  I gutted it out but recently wondered why I do not feel the same.  Prior to treatment I felt great but got fatigued very easily.  I too was a victim.  In a car accident in 1975.  got it through blood transfusion.  Only after my 50yr old ck up that the doc noticed something in my liver enzymes was off.  It then began.
treatment ended May 1 2010.  
I read all the negative feedback from this forum and wonder if it actually based on individuals?
I was very active prior to and am working on getting back to being very active,   VB and surfing.

I will say that there are 2 distinct issues I have noticed.

1.  My gums have receeded slightly to expose the roots in one area?    Feel like they may fall out shortly and was not like that 6 months ago.

2.  I do have aches and pains in the mornings, lower back stiffness and some jount pain.  Not sure if attributed to my recent sports activities.

I did read where mental lapses were noted, but I actually feel sharper?
Wish the physical part came around

I have been trying to take a positive viewpoint on all this as difficult as it has been

I feel for the people having huge issues,  I have been there on some.

My doc really skirts the issue I call, but I do have an appintment in Aug where I will control the discussion and deffinetly get more info pertaining to what I have read here.   As with all big pharmaceutical companies for the most part there are no cures,  only masks.   On my last visit to the doc he said that the virus was undetectable.  so I asked if somewhere down the road could I give blood or donate an organ?  He said no.  I responded, so then I still have the virus.  His reply was it is undetectable???????
Given that we all still have it but it is suppressed.

At this point, which is still rather early I am glad I got the treatment and hope it does not return.
good luck to all

hawk

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Hi there,

You've tagged on to a thread that was started in 2004. You should repost this by going to the top of the page, and clicking on the 'post a question' button above. This will open a new topic so others will see you.

Bill
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Been almost 2 years for me and i stil get weakness at times.. I hate this crap...
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Hi Jeff, wishing you all the best in regard to your health, hoping you get some improvement or relief soon. Deeply empathise with your frustrations of physical symptoms three years after tx, and the stress and anxiety of navigating a pathway through the medical system. Strange paradox that anothers suffering brings acknowledgement, relief and a shared validation of experience...It is reasssuring to know that compassion is only an email/forum post away. Know that you are not alone, take care,
Sandalwood.
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Your comments are very enlightening.  I don't believe the doctors tell us everything.  They probably are part of the drug study and get $$$$ for each patient's case history.  Consequently, they downplay the side effects.  I hope these side effects are not permanent.  I definitely feel mentally slower and full of aches and pains, along with my chronic respiratory problems all agitated once again.  Now on inhalers and meds for allergies.  What next????? Hope it is worth it.  I was at stage 3 and started tx June 13.
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I was on interferon for 1 year, combination therapy with ribaviron. During therapy I had horrible joint pain. I have been off of it 2 years, my last dose was July of 2008. I still have horrible joint pain daily, no energy, bouts of depression, along with several digestive issues. Plus I developed SVT (a heart condition). I have cysts up and down my femoral neck on both my legs from where I did the shots, and they have calcified and turned into bone spurs.
I have been looking forever on long term side effects after interferon treatment, and I am yet to find anything other than people suffering from the same issues. My doctor is chalking it up to fibromayalgia, I have all the symptoms down to the last one, but for goodness sake I am only 24!!!
I am at a loss, and at my wit's end.
If it wasn't for my daughter, I would have ended it long ago.
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Please, try to hang on and not to think like that. Ending it all is NEVER the answer. I understand that your symptoms are very real, I understand the pain. But your daughter needs you, and you need yourself too. You still have a lot of life ahead of you.

Were you able to get rid of the virus? Can the doctor prescribe you something for the pain? Yes, fibromyalgia can occur after prolonged interferon therapy. Try to visit  different doctors-maybe one of them will find an answer to your problems. Often you have to go through several before you find a good one.

I think, you are in one of your bouts of depression. Do antidepressants help you? If not, maybe you need to give another antidepressant a try? Just do not give up.

I just want you to know that you are not alone. You can find support here.
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The viral count has been <50, "undetectable status", since the treatment. I have genotype 4, the most common but unfortunately the hardest to treat. I don't think i have met anyone that did teh combo therapy for a full year. The worst damage to my liver was fibrosis, and that was because the virus was at stage3, close to stage 4. Within a week of finding that out I had the liver biopsy and started treatment.
It's kinda frustrating. Have tried many antidepressants, nothing works. My doctor gives me medication for pain, but it doesn't always help.
Kinda makes me wish i had just not done the treatment, I seem to be worse off now than I was before. But I am glad to know I am not the only one still suffering effects years after treatment.
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Many people on this forum treated for a year and even much longer than a year. For genotype 4 and genotype 1 standard length on treatment is a year.

I think, genotype 1 is the most common here in the US, and, it is the hardest one to treat. My husband has it. In some other countries genotype 4 is the most common.

At least you were able to get rid of this virus.

  
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I agree that you should look for a different doctor. Many of them seem to loose their empathy after practicing for many years and they really don't HEAR what you are telling them. There are good ones out there... it does take some looking sometimes. but when you find one that really cares about what you are going through, and is determined to find you some relief, you will be so glad that you took the time to look.

Diane
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Always try and remember when battling anything after treatment that it's better than end stage liver disease......it sort of helps me when I realize the things that COULD happen but hopefully now will NOT.

I have never ever heard of anyone developing cysts like that before from interferon and I've seen an awful lot of patients come and go over the years.   i have to wonder if it's unrelated - I've just never heard of anything like it.

I treated for 72 weeks three years ago.
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It's been a good eight months since I stopped tx.  
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Such cysts/spurs would be very uncommon in 24 year old. These changes are more typical for older patients.

I was very surprised at how young this person is. I always thought young people tolerate treatment better.

I think, helping depression would help everything else somewhat.
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I will be 1 yr post tx in Dec 10. I still have the cough, It is getting better. I cough mostly during the night or when I first get up. I still have fatigue but cough has been the worst. I do thin it i getting somewhat better. Good Luck!!!!
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I think why I didn't tolerate the treatment as well as some younger people is because most people my age only have had it for a few years. I was born with it, as was my sister. (Crazy! Rare for it to be transferred to fetus and it happened with both of us!) So I didn't receive treatment until I was 19-21, so I had had the virus for 20+ years. My liver is fine besides from slight damage from the virus (like the fibrosis) because I have always taken care of myself, and don't drink. (well, occasionally I will have a cocktail but I am under a lot of stress). It's just everything OTHER than my liver that is screwed now.
When i was on the treatment, the joint pain was the worst. I think it was because of the pain that I was fatigued and depressed a lot. Once the pain is relieved, my mood is much better. I remember getting horrible fevers about 7 hours after the shot. They told me, take it right before bed, the side effects are not as bad cause you sleep through the worse of it. BULL. After sleeping for a few hours, I would get woken with a fever, chills, muscle spasms, etc. When I stopped treatment, the joint pain continued. "Oh, in 3 months you will feel a difference." 3 months passed, nothing. "It takes 6 months for you to start feeling better." 6 months gone, nothing. Now they are telling me "It can take up to 5 years.." I am like REALLY??
All i know is, I am about to turn 24, I have a wonderful 6 month old little girl and a very supportive husband, but I can't enjoy anything because I am worse off physically than my 67 year old mother in law. (who has fibromayalgia (sp?))
My husband tries to be supportive, he really does, but he doesn't understand how sick I am. He is one of those perfect health perfect immune systems I have a broken femur but I will suck it up and deal, screw pain medication type guys.
I guess the main question for that last part is, how can I get him to understand how miserable I am physically?
Sorry, long post, but I have no one in real life who understands what I am going through, I don't even think my doctor does. It is nice to have someone out there say "hey, you are not crazy, it happened to me too".
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i agree w so and so who said end stage liver disease is worse than chronic pain/malaise, etc. i know what all are as i live with them. My husband has 8 days of interferon therapy left. He is 67 and starting to have age related health issues. his great fear is that his aches, pains and fatique will continue after the interferon. My fear is that he won't live through the rest of the therapy or whatever other awful side effects are to come after treatment. I have been his support through all of this and since his cognitive skills are so confused, he has been unable to communicate his appreciation, choosing instead to be vocal only when something is displeasing. It is awful when your partner is not supportive and they can never know just how you feel, no matter how often you tell them. Chances are you are worse off physically than your mother in law but thems the breaks and as my own beloved but long passed mother used to say, just suck it up. I know it is harsh but so necessary at times, esp. when we get to feeling sorry for ourselves.

I have an inoperable neck injury that causes chronic pain, i was told by the neurosurgeon to learn to live with the pain. so that's what's happening plus close attention to diet, exercise and special physical therapy for my neck.Try a neurologist who specializes not only in pain management but physical medicine as well, they will be able to help you practically exercise your way out of the pain, plus some major opiates.

Keep a gratefullness journal and be thankful for every day and every one. my goodness, a lovely daughter, who could ask for anything more? Remember, some of us have no-one with only our glass half full attitudes to make it through.

EVERY LITTLE THING IS GOING TO BE ALL RIGHT. take care.
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Me again...lol.  I now have no teeth remaining!  All of them died, broke off and are now gone.  I have severe loss of cognitive functioning (found through neuropsych testing in June of this year).  I had a repeat MRI of my brain in June also.  First MRI was done prior to my second tx for Hep C.  they found I have had a series of mini strokes.  I had a heart to heart with my primary care doc in July.  He's now determined to find out what's happening to me.  Loss of bowel and bladder control, loss of hearing in my left ear, skin rash, tooth loss and receding gums, depression, irritability, vertigo, feels like someone has my brain in their hands and they are squeezing it.  My brain literally HURTS.  My GI continues to tell me he's never heard of these types of problems post tx!!!!  It's a documented fact that, at the very least, brain fog and Vitamin D deficiency are the result of Interferon, ( my Vitamin D level is seriously low)  Am now on mega dose of Vit D.  Are my "symptoms" age related?, (rhetorical question).  I don't believe, nor accept that.  I was fine prior to tx.  All of my problems began to arise within 2 months of beginning tx.  

I did apply for Social Security Disability.  I was denied on the first attempt but, was awarded benefits on my first appeal.  

My heart goes out to all who are experiencing post tx problems.  And believe me.....It's not in your head!!  I've never heard of anyone "willing" their teeth to fall out of their mouth!
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No in all of the many many years I have been on this forum I have never heard if anyone who's teeth all fell out - nor all of their hair to fall out or have a bunch of mini strokes.  I agree with your doctor on this one.  It seems to me that you have some other condition going on that caused this - a cavity or root canal here or there is one thing but this is not typical in any way,
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What is the health of your liver?  Being a non repsonder perhaps advanced liver disease has contributed to some of your problems.
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Hello, you are not alone.  I've read of many who are having sudden unexplained deterioration/loss of previously healthy teeth post tx, myself included.  I am experiencing a disorder called internal resorption where the body attacks the root of a perfectly good tooth causing gum and bone infection.  I am 19 months post tx and cleared but some days I feel it was at too great a price.

KF
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Mike Simon and NYGirl posted recent findings regarding HCV virus infecting the brain. It has bumped to page 2, but here is the link:

http://www.montrealgazette.com/health/infect+damage+brain+tissues+Report/3628505/story.html
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I was on drug study for for interferon in 93 , I was non responsive. I progressed on till 99 when was transplanted 6-27 -99 in Cincinnati Ohio. Hep c is back . I have had many issues with meds , Prednisone damages bones .Neural I think caused heart probs. No longer take this on Prograff now and Cellcept .I still have the fatigue is it from Interferon couldnt say for sure .Been ask to do Inter/w Rib ,With heart condition and side effects I choose not too .Post transplant 11 years , I do feel for everyone who goes down this road but always hold your head up Play your pair of dueces like there aces . I have many days that are aces and some are not but always have Faith Hope and Power of Prayer ! Just remeber anything is possible .Thank You Uc Transplant team and Dr .Douglas Hanto who teaches now . Future is always looking better thanks to people who care and Co. Who do reaserch and studies . Get a great hepatologist and do research and try make best of everyday !
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I have to say that this forum has left me breathless... I'm 35 yr old female w/ geno type 1a, I was diagnosed in June 2010, had biopsy in Aug 2010, no cirrohsis, but some fibrosis. Had lower back surgery in Nov 2010, which has healed great.  That put a hold on me starting my treatments of interferon/ribavirin in Jan2011, My liver enzymes where normal this time, I have noticed this week more than ever being so tired, I have slept more this week than I think I ever have.  I'm not hurting anywhere, just really tired, I have to make myself get up and go.  I'm a Respiratory Therapist, I think I got Hep C while working in the hospital.  I really don't know or care to drive myself insane trying to figure out where and why.  The fact still remains that I have Hepatitis C.  That still takes my breath and hurts me on the inside to say those words.  I have a question, I have a monogamous relationship, he is very supportive and was with me when I found out I was positive, via letter US mail from the American Red Cross.  You can imagine the look on my face after getting that info in a letter...have you guys had a productive relationship and did your partners ever test positive.  I'm so worried about making someone else sick, I really pay attention to where my toothbrush is, and if I have a small cut on my arm from a small scratch.  I'm so scared of making someone I love sick.  I don't know how long I have had this.  The Md's act as if I haven't had it very long, They said my viral count was 8...whatever that means, they were not happy about that #, they said they want it to be much lower than that.  I'm going to wait for the new medicine coming out this year before I start my 48 week of treatments, they want me to take interferon/ribavirin/and the new one Telaprevir.  I'm scared to death, I know it has to be done.  I'm young and healthy right now.  I think I have to be like this to be able to make it thru these gruling treatments, I like to read these forums to get my info and learn from the people who have already gone thru this.  You guys sure don't make it easy.  I get upset just reading what kind of pain and issues you have had even after the treatments, I can't die from this!  I won't Die from this!! I want this disease out of my body or at least be undetectable, to me that means alot.  I don't have any children, this has put the icing on the cake for that experience, I thought I had all the time in the world.  I feel 25yrs old, I look like I'm in my 20's.  I am resilient and I will not let this disease make me or break me.  I will let this experience mold me into this strong person that it is going to make me in the end!  I know that everything has its purpose and this does too.  Just plz say a lil prayer for me.. I'll let you guys know how I'm coming along this summer, that is when the new Med is supposed to hit the market, I'm told. God Bless
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Hi and welcome to the forum!  You are best to start a new post to get more replies.  I think this one is from 2004.   Right above the main page there is a box that says "start new post"  click on that and go from there.

I have been with my husband since 1987 and he luckily did not get infected by me.  I would still be careful as far as protected sex, razors, toothbrushes and what not just to give pease of mind.

Good Luck and will be looking for some new posts from you.

Denise
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Almost a year has passed since i posted the above post, and i think it will be worthwhile to update it for the sake of those who are still battling with the after effects.
Every emotional stress will cause physical symptoms of disease and vice versa - a disease will cause emotional distress. What we complain most often here cannot be clinically verified, and even if it can, the stress as a contributor cannot be ruled out. The only indication that there is something wrong is most often a kind of chronic pain and fatigue. The physicians know how dangerous stress is. The stress is a deadly disease if not treated. The stress is not just a 'state of mind' as we like to believe, it is a most potent killer, the very source of most 'modern' diseases. Besides mental symptoms, it can cause a variety of physical symptoms from flue like symptoms to cancer. All i can say, that in the end it is all in the mind, even the most deadly disease.
I know many will disagree but that is because they do not know how deep mind is. I speak from experience. We burry so much garbage deep within our minds and think it is gone. It's not gone, it's festering in there, gradually changing the chemical balance that will one day kill us in one form or another, and we will think it has nothing do with what we fed our minds. Anxiety and depression are the symptoms that our mind is not doing well, the actual didease is the sequel. Healthy body depends on healthy mind.
So, as long as we feed our mind with all those fears and concerns, we will continue experiencing the after effects.  Hepatatis caused us stress, and interferon exacerbated it greatly. We suffer from something similar to post traumatic stress disorder. The therapy was so traumatic that we cannot get rid of its psycological after effects.
I know it is difficult to believe that fybromyalgia or some autoimmune disorder, or whatever else is bothering us is stress induced, but as i said i speak from experience, and i know with certainty that it is. Despite our symptoms feeling so 'very real', they are not. The 'reality' of the symptoms is an indication that there is something wrong in our minds, not that the symptoms are 'real' per se. Our problem is what we feed our mind with, not really the physical symptoms, and as you can see from all the posts we are feeding it with constant fears and anxieties. All that pain and mental fog we feel long afterwards is stress induced. I know many will jump up at this notion claiming that all of this is not 'just in their heads', claiming that there is an objective cuse of their malady over which they have no control. It's a personal view. We can shrink the responsibility for our own thinking or we can become responsible. It'seasier to to surrender our responsibility and seek help 'out' there, but the help as they have already seen for themselves will not 'happen' - neither the doctors nor the medications they prescribe can help alleviate the symptoms. On the contrary, all such additional medication will only make the things worse.
Why should we be quick to defend our weakness and irresponsible thinking? Is it not good that it is 'only in our heads', because it gives us the power to control our own life? Why do we prefer the disease to be 'real' and beyond our control? It is as if we are punishing ourselves. I cannot convince anybody that it is 'only in our heads'. I have found it for myself and i have 'cured' myself by taking my life in my hands. I suffered all this symptoms as you do. The doctors cannot help. Any additional medication will make you even more sick - in body and in mind. The only way to find whether it is truly only in your head or not is to experience it for yourself by changing the way you think. No amount of words can convince. Only the experience can. To experience the difference we must first think differently, else nothing will change, and it will be the same old story day after day. Why are we so concerned with all this bodily aches? Are we not giong to day one day sooner or later from one thing or another? Why so concerned with the body? Is it to derail us from the real concern that is the state of our mind?? Let me be biblical and repeat the age-old wisdom that by finding the kingdom of god, all other things will be automatically put right. In other words, if our mental house is in order, the body cannot fail but to follow. Whether yo believe it or not, all the disease is an outcome of unbalanced (read: frightened) mind, from a headache to the cancer.
Everything is in our heads, and it is good like this because it gives us control over our own lives. Surely, we can believe otherwise and feel sorry for ourselves forever and seek the 'healing' from those who cannot 'heal' even themselves. Whatever we choose to believe becomes our reality precisely because 'everything is in the mind'. We can believe whatever we want, create one theory after another, seek one medication after another but it is all merry go round - a distraction from the real problem, which is the frightened state of our own mind. We are 'out' of our minds with all this incessant worrying and concerns about the health of our body. If we bring the mind back home, we would be cured. We will die one day anyway, no one lives forever, the body is not forever, then why waste all that time by worrying? It's the fear in our minds that causes physical pain, not vice versa. The only way to find the truth about this statement is to try to live as if everything is in our heads, and see the results. Any discussion pro and contra is only a waste of time. I know what i am talking about because i talk from experience, not as a matter of opinion.
Last but not least, there is a herb that can cure all your 'health' problems by curing your mind, but it is not for faint-hearted. SALVIA divinorum is a potent psychedelic plant with many healing properties, especially those relating to chronic pains, but if you ever consider its use, inform yourself properly before you do.
Let us care and love each other for that is the only cure for all ills. I would not love you if i told you my opinion because that would not help you. I only told you what i know from my own experience to be the truth.
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I don't know if I should be posting anything on this website, I have no Hep C, but my father has and he went through with the treatment that you inject, which I'm not familiar with the name of. This was over 2 years ago, but his mental health has been spiralling down since then, he is extremely paranoid, that's affected the household. it also doesn't help that he was once a nuerologist, thus feels as though he knows it all and doesn't need help. I agree with one of you about going to a naturopath, but I just wanted to know whether paranonia is a common side effect after the treatment. Thank you.
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Now I know what is wrong with me. I had my last treatment 3 months ago. I feel like the walking dead. I'm even too tired to stay depressed. I am 56 years old and feel like a zombie.If I hadn't found this site, I would be scared. I was scared. I had my PCP worried. We did abdominal x-ray, full lab workup. I even told her to check me for cancer. I felt that bad. Everything came back normal. Fear gone, fatigue still very much here. If they had told me at the beginning, I would still take the treatments. I want to live. I thank God for this site. And thank all of you for your postings. God bless all of you.
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Sorry to hear you are feeling so rotten. There are a few of us here dealing with the same issues.

At least we know that somebody in the world understands. Nothing is worse than having doctors act like we are hypochondriacs.

Diane
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dry mouth,fatigue,muscle/joint pains anxiety and depression

there are literally hundreds of possible causes for the above
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'hundreds of possible causes'...sure......but in the case of post-interferon after-effects, its just ONE cause...the treatment.  Its pretty obvious, when it happens as a direct result of, and immediately after therapy...and the cases are all basically similar in nature.  If it walks like a duck........  Even my rheumatologist has a name for it, and has a ton of patients with the same problems after therapy.

Drives me nuts hearing this...hundreds of possible causes from laymen who have not experienced, nor are aware of the frequent and numerous cases of post-interferon side effects.  Many of the more current doctors are fully aware these days as well.  Most of us have had all the 'other hundreds' of possible causes checked out....nope...its not one of them.  Its the interferon.  What is hard to understand about that?  Its being discussed daily on forums like this, and has happened to a significant percentage of those that tx.  

Thanks for your opinion though...even if it is vague and incorrect.

DoubleDose
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im no more a layman than you  i see your only contributions to this forum are all the same
this does not make qualified to express anything other than your opinion  qualified expert medical opinion differs substantially from yours  ok  whats a rheumatologist really know about interferon anyhow  they dont prescribe it  they have limited background in genetics biochemistry biophysics or most any other related field  ask a hepatologist  dont go to an eye dr for hemmorhoids
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"layman"
noun; nonprofessional, amateur, outsider, lay person, non-expert, nonspecialist
=============================================================

Most of the people on this forum ARE laymen.  Unless you consider yourself a professional or have some medical training, I'd venture that you are a layman, just as I certainly am.

A small gripe point;
Please use periods when sentences end.  A capital letter would also be appreciated when you start a sentence.  It would take little time and make it so much easier to understand what you write.  

I have a few acquaintances....people who have treated and had post TX side effects that lingered who are seen by rheumatologists.  Actually, since the rheumy's treat many people post TX, and since auto immune issues ARE a known outcome of SOC TX (in a percentage of people who treat), many rheumatologists ARE aware of the issue, the connection and have some sense of treatments.  Yeah; they don't prescribe IFN.  They deal with patients who have been on it and have issues due to it.  I'm not sure where you get the idea that rheumatologists are ignorant on the subject.

I understand that you may not like reading about longer term sides of TX in a HCV forum.  You are not the only one.  I sometimes think there should be different forums for different subjects so that this discussion isn't "in the face" of people who are currently treating.  At this moment one does not exist here.

The flip side of that coin is that there is a segment of people who HAVE treated and who have some issues.  It isn't right to be dismissive of their pain and their issues.  One can find many forums and many doctors who will help a patient get through TX.  OTOH there are very few doctors who are able to help with post TX side effects.  Many are not aware that they exist.  As annoying as these threads may be for some on TX, they are helpful to the smaller segment who have few options, remedies or understanding of what happened since TX ended.

best,
willy
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i guess you didnt get what i said  i never said i wasnt a layman  if my writing style bothers you  you may want to get that checked  and no matter how well your grammar and punctuation are i guess it doesnt stop you from putting words in my mouth or misconstruing my meaning  actually all the rheumy has to go on is laymen information
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Punctuation and capital letters are meant to help the reader understand what the writer means. If you want us to understand you better, give it a try. This isn't a text message where you have a limited number of characters per message.

Also, it is good for people who are doing tx to be aware of the possibility of lingering problems. I was sure that I'd be feeling back to normal by a month after finishing, and when I still had problems it was scary for me. Because of threads like this, I know that some don't get over it as fast as others, so I'm not as concerned.

Rheumy? "Rheumatologists deal mainly with clinical problems involving joints, soft tissues, certain autoimmune diseases, vasculitis, and heritable connective tissue disorders. Essentially, they are medically treated diseases that affect the musculoskeletal system. They include many autoimmune diseases, as these conditions often cause rheumatic issues." Wikipedia.

You do understand that these doctors go through all of the regular medical school AND THEN they get extra schooling in the SPECIALTY of rheumatology., right?

Diane
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right
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1225178_tn?1318984204
One last point that I forgot earlier. My hepatologist officially turned me back over to my internal medicine doc when I finished my tx. So that kind of means he doesn't want me to come to him with Post tx problems. At least that is how it appeared to me.

Diane
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however a good rheumy ( willy 50 coined ) would let any hep c tx patient know that the virus also causes autoimmune disorders  but they wouldnt be able to make money that way  ive heard of a hep c patient prescribed enbrel ( an immunosupressant ) by a rheumy  duh try reading product info  not a good call as they are far more dangerous than interferon ( an immune system stimulator ) and could allow any remaining virus to replicate  turns out the patient was misdiagnosed with rheumatoid arthritis
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Not surprising. There are many rotten doctors out there in all specialties.

It took me 26 years to get my narcolepsy diagnosed. I was told I had hypoglycemia, depression, stress, hypochondriac, had every blood sugar test they had back then, but nobody even thought about a sleep disorder. I found it on the internet and told my family doc... he had me do a sleep study and .... Yep! That's what it was. We have to advocate for ourselves and not give up till we find a doctor that will actually LISTEN and then be willing to dig deep enough to find the answer.

Such is life.
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sorry to hear that  im sure the reason is that they feel theres nothing they can do  theres not much anyone can do except pile on meds and/or draw the process out indefinately
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Good thread here, I felt great before I tx, during tx pretty sick,   I finished up triple trial, 6 weeks later relapsed.  First I was told I would feel better in 3 months, then 6, then 12 cause the Roche Polymerase Inhibitor R1626 was more damaging than anticipated.
I believe it has taken me over 2 years to get to my new normal which is about 75% of my old normal.   While the pain in joints is bad, the worst part is the cognitive problems.
If I was SVR it would have all been worth it.  Since I am still detectable with cirrhosis I regret the tx and all that I lost, including my job of 28 years.
My doctor tried to tell me my sx were rare, very rare, which didn't help me much at all.  
Thank God for support groups that told me my sx were not rare.  My doctor tried to tell me my sx were from HCV which I did not have before.
I am hoping the new drugs will do what they "say"  With SOC only being 41% anything has to be better.  One of the best things a person can do is get on AD's before tx to help with the mental side effects.  Waiting until you are in clinical depression, on tx is not a good idea
I wish you all the best of luck
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It has been 3 weeks since I completed 6 months of Interferon/Ribavin.I truly beleived I would feel some feeling of''normalcy'but that is not happening,Side effects such as'Bleeding Gums/Tiredness/Heady Feelings/Aches/Pains/Bloating yet continue,to name a few.I have been put on'Iron/B Complex/Vit C.Does anybody have any suggestions?Nobody tells you what to ecpect or not.Does the feeling of'well being'ever return??? Mandira[Bangalore/India'
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its very hard to believe all this happened to you in such a short time  ive heard alot of speculation about side effects but NEVER anything near your uninformed  ramblings     tooth decay for those on tx is dehydration thats why they tell you to drink all that water
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I finished 60 weeks of tx five months ago and on most days I feel worse than I did prior to tx.   I have developed multiple auto-immune diseases.. thryoid, alopecia areata .... and over all pain and fatigue.  I am hep C free but I am wondering if I will ever feel okay again...
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I forgot to mention my husband finish tx successfully seven years ago and he suffers terribly from joint pain, cysts and memory loss..
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I am a 45-yr-old mother and wife who has been status post Hep-C tx for almost 7 years now. I continue to be in 'remission' and am very grateful.

I was diagnosed with Hep-C back in 1989 when it was still called non-A/non-B and went without treatment for over 10 years. It took me 3 trials (and almost 3 years - from 2001-2004) before the chemo irradicated the virus. I don't think they knew as much about the side effects back then as they do now. I experienced every side effect of treatment and they subsided enough for me to be able to return to work; however, I am not the same person since I was on Peg-I/Ribaviron. If all my current issues are in my head, then they weren't before I had treatment! My overall well-being has declined since treatment with everything from depression to fatigue, low wbc to cryoglobulinemia - you name it. In addition to the symptoms experienced during treatment which have waxed and waned over the years, gradually worsening in intensity with each wane, I have also progressed from osteopenia to osteorarthritis throughout all my joints, fibromyalgia/fibro-fog, unexplained autoimmune disorder, you name it.

I don't blame everything on the Peg-I/Ribo but it sure has had some negative contributing factors in additions to it 'curing' the virus. As I stated earlier, I am thankful to no longer have Hep-C but my health has surely gone downhill since.

I used to work full-time, complete online graduate-level coursework, be an attentive wife and mother, as well as meticulous homemaker. Now, I am lucky to get out of bed, shower and do a single household chore. How I wish all of this were just in my head! Because then, yes, I might feel as though I had some control over my situation.

Best wishes for complete healing to all who deal with Hep-C in whatever scenario (as one with the disease, one going through tx, post tx, or as the family member). It helps to have this kind of outlet and support.
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Just thought I'd share my 8 months of interferon and ribavirin. It was terribly hard and I live alone, especially the last 3 months. I had to get oxygen for the last month - Couldn't walk as far as the bathroom without feeling feeble.

I feel somewhat duped because the MD gave me no clue about what I was going to endure and the fact that this treatment can kill you. Needless to say I no longer see him.

I would advise anyone considering starting the treatment to plan on not being able to work and arrange for help as you will become very weak.

Having said that I should also say the side effects vary wildly and are numerous.

On a positive note 5 years later an no sign of HCV. It was difficult but it worked!
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Si the longer the ex poser to pegasys the greater odds of other illnesses. Maybe the 6 month treatment with triple therapy is the way to go for treatment navies that respond well even if they have cirrhosis they still have a high success rate without the dangers of failing health do to the extra 6 months of ex poser to pegasys
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Thank you all for posting your comments. This has been so helpfull.
In 2008 I had a 48 weeks course for HepC type1A. I have been very very sick but cleared the virus. I though that everything would be great again for me after the treatment because I felt pretty horrible before the treatment. I was diagnosed after 21 years (I had contracted the virus during a bloodtransfusion after a ceasarian). Anyway the treatment with Interferon and Ribavarin was hell but successfull. The first couple of months I felt OKish but I was told it would gradually get better. Well not really I developed serious joint pains, fatigue, brain fog and sleep problems (wel I was never a sound sleeper but it has become worse) I was sent to see a rheumatologist who diagnosed essential mixed cryoglobulinemia a well known virus related to HCV. I am being treated for that but now I also developed tendonitis in multiple tendons (elbow, shoulder, achilles, hip, neck and knees) and I am so tired. I find it harder and harder to go to work(fulltime), study and be cheerful at home for the family.
I was starting to think I am a hypochondriac but reading the comments in this forum makes me realise that I am not imagining things and that I am not the only one with these problemes. This is huge a relief for me and brings some greater understanding and will help me to cope better.  
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I am very new to this suffice to say I was diagnosed with positive hep C antibodies 25 years ago. I embarked on an alternative medicine regime - vitamins, chinese herbs and healthy diet and have had normal ALTs for the duration. Suffice to say, I have had niggling health issues in other area for years. I have suffered digestive issues, vision problems, thyroid removed with nodules 5 years ago, breast lumps and have battled with fatigue and insomina for years. Headaches come and go and I have more recently begun to suffer joint pain. All this without any treatment, but makes me agree with Socrates that the virus does eventually impact on other parts of our bodies if left untreated. I feel I have been measured on my ALT levels for years whilst the disease has been simmering all the time.

Recently my ALT was slightly elevated for the first time and my doc is finallyndoing the test for viral load etc - results in a few days. She wants me to go to a Hepatologist for further opinion and had suggested the likelihood for interferon/combined treatment for the future. She has talked about the side effects a little, but I had not idea until I read this forum how difficult that can be. AND the after effects seem even worse.  

I am concerned as I live on my own, have a limited network of family and friends as support and am a long time sufferer of depression and anxiety. I have read through all the posts on this forum and have not idea what to do. It seems to me that the irradication of hep C with the current treatment regime needs a lot of consideration. As some have said, we need to consider our personal circumstances and make decisions accordingly.

I have to weigh up the likelihood for long term unemployment with no savings behind me, little support and the depression and anxiety I already struggle with on a daily basis. I am actually becoming quite concerned and have no idea where to look for any alternatives. Ideas would be welcome.

Ros
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You have posted at the end of a fairly old thread. You may get a better response if you go to the brown"post a question " at the top of the page and start your own thread.

A few things. You say you tested positive for HCV antibodies 25 years ago. Was there ever a follow up with the RNA/PCR test  to ascertain  whether or not you have active HCV infection?
Approx 25% of people exposed to the virus will clear it by their own immune system however will still test positive for the antibodies.

Regardless..... from what you say you are having that test currently and this will  definitely tell the story .

The  health issues you are experiencing may somewhat be related to HCV ,however there is a good chance many of them are completely unrelated.

A healthy diet is always a good thing ,whether one has HCV or not,however your alternative medicine regime will have done nothing to eradicate the virus ,if in fact you are infected and some of these adjuncts may even do further harm to  a damaged liver.

The Alt & Ast levels over the years are really not much indication as to what is going on as far as amount of liver damage(fibrosis). The only true way to gauge that is to have a liver biopsy  or possibly a fibroscan .

It is good that you are finally going to see a specialist and he/she should order the appropriate tests to find out   .first if you have HCV  and if so to  to run the further testing .as I mentioned to gage liver damage.

It is only at that time treatment would be discussed with you by your doctor..and the regimes differ depending on what geno type you may have.

Treatments today are approx. 75% sussceful and things are looking even brighter in the future.

Current treatments  affect everyone differently..some have only mild side effects and others find it more challenging.however doing nothing  can have dire consequences for many.

Good luck with your specialists appoint. and welcome to the group..
Will.
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After clearing the virus in 2003 my liver regenerated somewhat....was stage 4 at the time. So for 8 years I have had severe fatigue, tinnitus and some short term memory problems....all in all not too bad. So to deal with this I have been drinking moderately and taking pain pills...stupid right? Well I just had another biopsy done and the pathologist said the specimen was black, shriveled and dead. At one point it jumped off the slide and said "What you talkin' bout Willis!" (props to GG for that one...RIP brother). Anyway I'm stage 3 but I'm also 60. So if I can do this for another 8 years then I'm damn well gonna do it rather than feel like ****. I take Maximum Milk Thistle, NAC, Sam E, vitamins C and E and flax oil daily. You can all tell me how stupid I am but I bet I feel a whole lot better than most of you do. I'm out almost every night having a good time. This is what I do and I certainly don't recommend it to anyone. Maybe I just have good genes or whatever. Maybe I'll be dead tomorrow. But life holds no guarantees for any of us now does it.
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Congratulations on you SVR. What one does with that is always a personal desicion..

Best to you.....
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Doctors are utterly (criminally?) naive about the log-term side effects of interferon - one doesn't treat with the gastroenterologist for arthritis, suicidal ideations, brain injury, personality alteration, cognitive dysfunction, psoriasis, etc.  

Just took a plane ride to Europe. Met a young person who worked for Roche for over a decade.  Person said started working for Roche to "save the world and help people" - eventually quit in disgust when person saw how Roche manipulated data on drugs to gain FDA approval.  

I had not disclosed or discussed my use of interferon to this person.  It just came up in conversation.  

Interferon combination therapy side effects are evil.  
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I read your posts.  Kind of bizarre.

For whatever the reason, treatment with interferon can cause autoimmune disorders that are worse than Hep C.  

According to CDC, only 1% to 5% of people with Hep C will die of it.  Most will have no symptoms.  The liver is a remarkably resilient organ.  I believe you are incredibly irresponsible to post that "if you have Hep C you will die from it."

My life was fine before interferon treatment.  I really didn't want to do it. Kept getting pushed - "6 months of fatigue and flu-like symptoms."  "Some hair might fall out."  Well, OK.  Read the warnings.  Took the drug.  Had no idea of the terrible injuries and diminishment to my quality of life it would cause.  

Had i known or been properly counseled about the risks, I would not have done it.  


The FDA approved interferon based on studies given it of side-effects that occurred and showed up DURING treatment.  It seems the worst side-effects show up afterwards.  Those that administer the drug (gastro-enterologists) are not those that treat the bad side effects (rheumatologists).  

Unless and until there are independent studies of long-term follow-up effects PROVING that likelihood of benefit from treatment outweighs likelihood of terrible side effects of treatment, I fall into the camp that you are far better off to exercise, keep your weight down, eat healthy, take alcohol in extreme moderation and enjoy life while you have it.

Interferon combination therapy is a BigPharma scam on society causing immense harm.

  

I question
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forgot my cites:

CDC:  www.cdc.gov/hepatitis/HCV/HCVfaq.htm#section1

Newer warnings (didn't exist when i took it) - look at the numbers and percentages - it's crazy:  

http://www.drugs.com/sfx/interferon-alfa-2b-side-effects.html
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I have more than one autoimmune disease that I developed LONG before I started treatment.  

Are they the result of my HCV infection?  I believe that to be true but I have nothing to back up that belief.
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Hi - I am 3 years past treatment now and although it was sucessful I am feeling worse than I ever did before the treatment. Am so exhausted all the time. I sleep for 4-6 hours during the day while my daughter is at school and have to go to bed by 10pm at night as am so tired. I work 11 hours per week and sometimes cannot even do that. I have been to the dr several times about this and no tests can confirm what is wrong.
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I was on the rebetron treatment for 24 weeks back in 2003. I didn't feel right for about 10 months after the end of treatment - I gained about 18 pounds during that time, mostly because I couldn't feel rested enough to be as active as I had been. I would just work, watch TV and sleep. On Saturday mornings I used to feel energetic, but during that time I felt like I needed more sleep even if I had slept in later.

However, after 6 months I started feeling a bit more normal, and by 10 months life became enjoyable again. The nurse at the clinic said all that happened because the interferon had revved up my immunity system into high gear for the 24 weeks, and my body and immunity system had to re-adjust to not having the interferon boost afterwards.
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I am 4 years post tx and I found the joint pain, fatigue, and low energy to be caused by low thyroid levels, low vitamin D, and the txing causing me to be sensitive to gluten-containing foods. I have corrected all of the above and I feel like a new person. Get your thyroid and vitamin D levels checked first, and then your testosterone. the treatment mucks with a lot of things sometimes...
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Im only 24 yrs old & i just recently did my treatment of 6 months. I have to say it was the most miserable thing ive ever had to go through in my life so far. The problem ive been having is memory loss! I cant seem to remember anything and its so frustrating, people are constantly reminding me all day & i dont know if its going to pass or its something i should go see my doctor about. any feedback????
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  I Just recently finished 48 weeks of the treatment,about three months ago. I was geno tp 1 a. 180 mg and ribavaren 6 pills a day of 200 Mg.
  It absolutly sucked! I did it in a trailer then a basement then I moved to south texas and finished up in a tent. I couldne work. Everything hurt .I was iritable, confused, blury vision, pain throughout my body, especialy my left hip which renderd my unable to walk five feet . I had to crawl to the bathroom when I was in the basement  apartment.
I did it all . never missed a shot. Three months later I am in a once a month pattern of the same ****. This last bout lasted five days. Alot of headaces , can't focus . I am 54. The hip was already hurting before I went on it, but I am sure it got worse after.
I am going to Ph th. and a numorous amounts of test.MRI's, Bone Scans.
Now that I have the coverage of a homeless man I dont have to pay one red cent for any of it. So I am stay;n this way untill I get everything taking care of... YES I would definatly go to the doc's as much as possoble. Good Luck
  
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Hi lilg, I am about 8 weeks post 6 month tx, triple with incivek.  Worse thing I ever did too and I am much older than you so hopefully the rest is ice cream for you. Anyway, I had big memory issues too.  It's getting better for me.  Much better. I still forget now and then.  Overthe past weeks i noticed the difficulties especially when I have not eaten, not enough water, been over doing it, the end of the work week, things like that.  I also have problems after meals especially with carbs.  Small portions through the day and lower onthecarbs helps me.  You may wish to post your question as a new question, this is a very old thread.  How long post tx are you?
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Hello Jas..this thread is soo old.  Please repost if you have a question
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I totally agree with you on the carbs.  
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I am so grateful for your comments!  I have felt like i was at the end of my days lately.  I also had hep C (geno 1) for 20 years before diagnosis and it is six years post tx.  Someone recommended fish oil tablets to stop joint pain and what feels like systemic arthritis pain.  Perhaps it's what everyone has
been saying, fibromyalgia.  I can see how all this misery could cause depression;  don't have it yet, maybe never will as long as there are fish in the ocean!!

Thank you for your post!!
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If you have not yet tried anti-inflammatory diet / Pagano diet, you might want to.  It works to ease arthritis symptoms.  It really does.  

It also seems to help mentally.  

Interferon seems to act in incredibly bizarre ways on our immune systems.  
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berlynn,  I just read this and have since been sitting here sobbing.  I am almost 2 years post treatment, and fully believe that I am dying.  Four days before I started tx, I ran a marathon. I fell at mile 3, cracked a rib, and finished the race anyway - another 23 miles! So, I certainly am not a wimp when it comes to pain....I am a 50 year old female, and a retired Navy Chief. I had gone about halfway through treatment in 2003, but was too sick to continue. I fell in love with an extrordinary, beautiful man, and we decided that with his help, I could finally complete treatment and live happily ever after, scuba diving, hiking, kayaking,making sculpture, and running marathons...we married, a first for us both, just over a year ago.
   I have spent the past 2 years becoming more and more depressed.  My pain, while  always present, suddenly escalated about 3 months ago. The ever-present insommnia has turned into night terrors, from which I wake screaming.  Yesterday, and then again last night, I experienced my first sleep deprivation induced hallucination. My friends called EMS and took me to the hospital when I collapsed, where I was treated like a drug seeker.  I am terrified.  My marriage is falling apart. During the night terrors, I am always being killed, limbs torn off, etc.
    I am struggling to continue working, in a very high stress position.  It takes all my energy to do this.  I am a nurse and nuclear medicine technologist, I do stress testing for a cardiology group.  Yep, if I make a mistake, I can kill someone...I am hoping, with the help of my husband, to find some relief this nightmare.  I am going to have to leave my job, as I simply cant handle any more stress.  
   I knew that there was a possibillity that I would always have pain, but never expected this.  I remain clear of the virus, thank God.  Would I do the tx again? I honestly couldn't say.  It has been a couple of years since you wrote this...does it get better?  
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To All;

I am sixty years old and was type HepC type one.  I was on treatment for 7 months.  I finished treatment in April of this year and the virus is not showing up at this time.  Since my liver was at stage 2 when I started this treatment I am sorry that I chose to put my body through this at all.  The pain that I feel daily was not worth the cure.  I was told 3 months and I would be back to my "normal" physical shape.  To all that are reading this post...think long and hard before following through with this treatment!  I think it is an inhumane procedure.  I also think we are suffering at the benefit of the drug companies that push this treatment and now we are a statistic.  This is not depression talking.  It is constant unrelenting pain.  I wish I could be more positive to those suffering as well, but I hope to reach the rest that are considering this treatment.
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greetings,
I've been very lucky in many ways - I found out I had hep C type 3 within 3 or four months of contracting it, only did 3 months of treatment with Ribavirin, pegelated interferon, and probably inhibitex.  I only had it for a year and only had stage 1 damage. I have had two extreme depressive episodes in my life pretreatment, but had no depressing during the treatment or since.  I'm at six months out, no detectable virus for 8 months.  The worst of the side effects I had during the treatment (weakness, terrible skin problems, especially the skin on my hands, pain in skin and back) went away within two days of quitting Ribavirin.  

Since stopping the treatment, I've had three dead hair follicles in my mustache.  At six weeks after treatment I began having nerve pain in my hands and feet, especially when stretching, and my arms had been falling asleep.  I did a master cleanse fast for 10 days and stopped having the nerve problems, but now at six months out in hurts to breathe from my bronchi to my voice box.  I'm now also having unexplainable pain in my shoulder and my arm is falling asleep again.  

These are not problems I've ever had before.  Has anyone else had similar problems?  I'm planning on doing another longer fast to try to get any of this out my system that might still be there.  I've done the master cleanse several times before and noticed tremendous positive detox effects after only a few days, but not this last time.  Only very subtle health improvements, other than the nerve pain going away.

Has anyone tried to chelate interferon out or something similar? Any other ideas on detoxing?  

Cheers
el Cuerno de Chivo
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A detox would be a really interesting addition to the treatment protocols to help clear our systems asap of all the emotional, mental & physical side effects.  I imagine if this were a routine part of tx there would be far less suffering and faster recovery times.  I myself continue to suffer side effects 6 months post tx after relapsing around 12 wks post tx.  I started taking various vitamins and supplements with copious amounts of water & adjusting my diet before I noticed any real changes to my well being.  A cleanse/fast/detox can only help.
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drink lots of water.....and give it time....i'm7 months post tx and still have a little stuff going on..nothing real bad.....took me 3 months post to rid of most stuff..the achy joints were worse post tx then during tx but even those are going away....hang in there..billy
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    i am f'n dying!!!   my last shot two days ago.    i see alot of my symptoms in these blogs. i'm not sure what to think. doctor said symptoms during treatment. not after. i supoort my family and now possibility of not being able to supoort my family is devistating!!!!!!!! oh yea  gene type 2. cleared at moment but is it really worth it???????    yes no hep c   but this **** is worse than  everything combined in my 42 yrs of living    
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I am post tx by almost 10 years......18 months on interferon alone, stopped for 6 and another 18 months on interferon w/ribovirn.  Yes, my viral load has stayed down, but I am still having the same symptoms as I did while on treatment, but in a milder form.   I am trying to work full time, but the pain in my feet and legs gets almost unbearable.    Right now I am experiencing a rash that covers 1/4 of my body.   It started post emergency gall bladder surgery 3 months ago.    
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Hey Crazy Im with you on that. My poor judgement sent me on a ride that begain in 07 that started with 48 weeks of POISEN Humm Doc sez not enough lets put you through another 6 months of Peg/treatment. Since I was already A man of mush, pain,depression, completly messed up, non funtional although I tried to work & do the rite thing (like Doctors do hugh! Frikin Doctors) be your own advocate do not follow unless you agree. Yea my last blood still showed no detection of the devilish crap. My life has been turned upside down. I have turned into A 55 yr old pathetic lump of everyday pain from head to toe that slowly moves in waves through all of my body and its extremities shurly not to miss a inch. Sleep whats that??.
My relationships are on a day to day, trying to make up for the foolish
things I said or done prior. I work hard to be active but the condition seems to win more than I would like. I AM A GOOD PERSON  I AM A GOOD PERSON.  A personal dream of mine was to play guitar with my son. Now that he has now become a skilled player I can only last for A moment. My wife is a saint but she is only human.I would be lost if not for her. (HERES TO GOOD WIFES LOVE THEM). I keep thinking I will get better, 5 yrs & waiting. Death seems sometimes as A way out, but not yet , not for me. I have been through Dr. recomended pain mgt program and I can tell you they dont have a clue when it comes to this pain. As many have stated on this site doctors ONLY view you as A DRUG SEEKER when you are only trying to be out of pain,get a nite of sleep , be happy & productive in life. I ask my doc to look into a change of pain meds.
she responded with you need to take a drug test because I was honest and told her I had used pot to try to relive pain in the past when I was in treatment, so her ansure was dont use pot but here try this MORPHINE WTF. Not enough studies done in effects of CBD contents in pot. Take A look/not thc wich is the high. Life is funny I have two great adult sons A more than wonderful wife a good home in the valley & two pooches but each day seems to suck more than the last very depressing and non existing life.
Sorry to bleed on you its my therophy also.
Agreed don't make your decissions in a doctors office. DO your home work
Timeing can make a differance of WHEN to do therophy
72 WEEKS OF THEROPHY 5-6 YEARS OF HEALING (HA!  HA!)  AND SICKER THAN BEFORE. I WOULD OF CHOOSE DEATH IF I KNEW. Remember doc sez 3 mo & back to normal / FU doc. Sorry to all of us who responded to treatment the way we did Thanks Doc
To all of you who are seeking treatment BEWARE devels dress as doctors sometimes
Good luck to all my brothers and sisters who have made poor decisions or were un fortunate in life. Remember you are not a bad Cat
Peace and love to ALL OF US
Chilly Willy
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As you know thats what 48 wks of interferon makes you feel like.
-------------------------------------------------------------

ah...no it didn't for me but  I congratulate you on your SVR.

.that is something I am only able to think about.....

so chill willy.......
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So chill it is but if I could do over. I agree more info first and find better support for the ones who struggle most
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Thank u for your congrats and I do hope it gets better for you and all
Sorry I am new to this I have never reached out or been involved in anything related to my illness scared I guess. like i said my wife helped me most Yea big ***** right
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Hi. I am so sorry for what you are going through. This treatment is hard, but I think some have it harder than others. It is not a matter of will or attitude, it is simply devastating to some people. Because some folks don't have that experience does not invalidate your experience.
I recommend you try a non-inflammatory diet and see if it helps-this Paleo diet is supposed to be very helpful for the sorts of symptoms you have. Also B vitamins.
Hang in there-you have a life now, I hope you can find the healing to create a good quality of life.
My sincerest wishes for all the best to you.
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Did you clear the virus ? Do you have a healthy liver ?

If you'd like to discuss your situation with us on the forum, I suggest you begin your own post by going to the top of the page and click in the box that says, post a question.

I'd help if you tell us more about your condition than simply that you did a long treatment and feel horrible now.
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Thank you not doing good now should pass soon I will return when better.
I will also provide info as orphanedhawk suggested when better.
sorry new to this, Thank you for caring
Bill / AKA Chilly Willy
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I have been on TX two times and have been off for two years now. I have relapsed once again. I have joint pain and bad, bad muscle cramps that make my body just ache. I have always worked out and am in great shape for going through all this crap. I didn't realise that it would turn out this way. The doctor give me 20mg oxycontin and Soma 3x a day but it hasn't been enough. My work is making it hard for me, 30+ year employee, they have treated me like crap. I just don't know where to turn?!
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Oh Dear rwilliams,
I have thought the same thing! I am 12 years post txm, was sva 3 months into treatment, developed hypothytroidisn, ra, fibromyalgia, numbness in my hands, etc. etc. etc.
Hang in there, There have been times in the last 12 years I felt almost normal.. Now is not one of them, though. the chronic fatigue is the worst. I am seeing a naturopath now, and eating better when I can muster the energy to cook! But I have a daughter also, and a grown son. They have kept me alive because I can't imagine what (suicide) would do to them. I just can't do that.
You are not alone. I Believe things can get better for both of us, and everyone else out there.
Prayers for healing to all-
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Or better yet don't talk about it, because interferon "saves lives!!!"
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You know my history
. I almost died from hep C. I lost my liver, lost my health, several years of my life. Only because of a liver transplant am I still alive and hep C was moving rapidly to get that new liver of mine.
Now, having completed treatment I am hep C free finally. Without interferon treatment I would be facing a second transplant, death, or nervously hoping the new treatments would be approved before the virus ravaged my new liver.

Nobody is happier than I am that once the FDA approves the new oral interferon free meds, we will no longer need this strong difficult medication to clear ourselves of the virus.

Maybe if people hadn't scared me so badly with all the bad things online about interferon, I'd have done treatment sooner, and just maybe it would have worked and saved my original liver.

So yes, interferon has saved lives and livers.
And it isn't so hard on everyone.

Please leave me alone.
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i had a year interferon treatment for hep c, was effective, my livers livers are now fine however , i have never felt the same and it has been close to three years  since i finished treatment. The interferon messed with my thyroid , i am being treated for that though i still feel tired, mental fatigue, constipation ,
depression, and lots of naseau....any suggestions would be appreciated !
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Hello Everyone,

I finished 6mths of Pegasys/Ribavirin therapy in June.  I got my 6mth post test and it was clear.  Yay!!.  However.....long lasting after effects have been bad.  They are getting better, but I am doing a lot of work to get there.  I, too, have had the depression, the severe aches and pains.  The medicine killed my thyroid and I am now on thyroid meds which is another story of frustration.  But - I wanted to share the things that are helping me.  I worked all through my therapy - every day - no leave of absence.  Thank god I have an office job, but it was hard.  I had pre-existing heart problems and my heart went into a-fib twice.  That was really bad.  Finally they gave me a laser ablation and that fixed it (so far - I'm keeping my fingers crossed.)  So here we go:
1) Rest, rest, rest and more rest.  I find that I need to sleep at least 8hrs, maybe 9 a night.  My body is just exhausted and I have to accept that.  Limited caffeine.
2) Low sugar diet.  I am concentrating on the organic fruits and vegetables, healthy lean meat as much as I can.
3) HIGH doses of Vitamin C.  If anyone is interested in how to do this, please post re
a request for the "recipe."  I was taught how to do this some years ago by an alternative med. practitioner (orthomolecular)  I take 15 to 20 grams of C a day.
That's GRAMS, not Milligrams.  This is fabulous for the immune system.
4) Acupuncture.  I am going twice a week.  It really helps with the insomnia and
anxiety.
Anyway, that's what I've got.  God Bless.  Hope this information helps someone.






Thatat
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Oh yes,

Forgot 2 things.  Stay away from gluten containing and processed foods.  Wheat and corn are the worst.  This will help a lot with the inflammation.

Also, gentle exercise.  Don't overdo it.  But I swim and walk.  I know this helps with the depression, too.
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Wow...this is a long thread...but it does bring to light what I've been saying about interf/riba COMBO....orphanedhawk is right...in the end, when you have ESLD and are waiting on one of the few livers that may be available to me you will try anything.  Had adverse side effects from COMBO therapy has I have posted on other questions. Was worried to start the triple TX but because of those two drugs but what was the alternative.  That option was taken out of my hands by my transplant surgeon because my liver is so decompensated the TX could kill me.  AND..AND..this is important...even if I had elected to ignore his advice and do TX and it was affective I would STILL have to have a transplant because my liver is so decompensated.  So we have elected to do the transplant, then it is hope that a new drug that is being tested will be available...have apprx. 2 yrs before new liver would be affected by Hep C.  SO...if Combo or TX works for you even if you have side effects, thank your lucky stars.  I was in that 1-2% adverse side effects group, but I was still willing to try anything new that came available.  Orphanedhawk has addressed this issue several times very effectively.  And she is right, just because someone else has a bad side effect do not let that keep you from recommended treatment.  I was a victim of mis-diagnoises X 3 and it cost me years.  Don't let that happen to anyone on this site.  Find professionals trained in these areas.
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sorry don't mean to add to this socrates and a couple of others have hit all the highs and lows....there seems to be some confusion as to what is being referred to...the Combo therapy of riba/interf or the TX which has an additional drug component.  MY bottomline on this is memory loss comes with age..if it becomes a real problem there is medication and it could be an indication of HE...fatigue...hectorSF gave me an great insight on my question re fatigue and it makes a lot of sense....this also includes sleep pattern changes.  When I was on just interferon I worked 80 hrs a wk. When I went on the Combo I went down to 40 a wk and someone gave me a teeny puppy to focus on..it helped...3 wks later he died from menigitis (meningitis)..had been healthy prior to getting ill...  I am a very upbeat, positive person...refuse to let anything beat me.  Got rid of two Gthere is medication for memory loss..do you have HE?
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talk about 7# puppy who thinks they can type...got rid of two GP's who kept treating me for depression like they do with women...got rid of one GP who wanted to focus tracking down who gave the to me...got rid of the GP who after I had my 3rd A/B shot said ok now your on you way...no more Hep C....got rid of the hepatologist who had a biopsy done and told me I was cured...my present hepatologist/liver specialist was beyond angery with his associate who no longer works there because my liver was decompentating and my HCV load was lethal.  Got a liver specialist, a internist.  Along with that will come specialists for your eyes, skin, blood, kidneys, etc.  Everyone has their own speciality...that is okay with me...I don't really want my transplant surgeon concentrating in other areas.  I want him to concentrate on being the best liver surgeon ever.  That's why they all specialize.  We do it in our regular jobs too.  My specialist will be the first to tell you to research...research...research.  Just like everything else in life you have to be your own advocate.  In other posts have mentioned combo problems to rashes, memory, hair loss, sun sensitivity.  What I haven't shared was that within 5-6 hours of giving myself a shot I would chill down that even electric blankets, down and quilts couldn't get me ware although I would run a 101-103 temp at same time.  Arms and legs would contract and I'd end up in a constricted fetal position unable to stand.  This could happen in the middle of the night or during the day.  If it happens while I was out and about it was frightening.  I still have some problems with my hands and fingers today many years later. 1st BOTTOM LINE....do you think they just put those possible side effects on the medication lables for the hell of it...no...someone, somewhere has POSSIBLY had that interaction...maybe not...BUT they do warn you up front.  But we blindly trust and go forward and really, what other option do you have.  To sit and wait for a cure that may or may not come.  Have always said that they have cures for many things but the drug companies get in the way.  If we weren't ill a lot of people would be out of a job...right?
and 2nd BOTTOMLINE...WE ARE ALL STILL ALIVE, fatigue, rashes, foggy brains and all to be on this website....and 3rd BOTTOMLINE...there is a potential easy cure that will be available within the next two years... several of us have stated that we need to be more vocal in getting the drug companies to get together and give us a cure that doesn't cost an arm and a leg.  I have HE and take Xifaxan 550 x 2 a day...it can cost $1275-$1345 a mo.  Yet, if I lived in Canada it would cost $170 a month.  Pharamacist said it is a sad state of affairs but that America pays the highest drug costs.
BE GRATEFUL YOU ARE ALIVE AND CAN STILL SHOUT AND FEEL WHAT YOU FEEL...ONLY OTHER ALTERNATIVE IS DEATH...NO ONE WILL HEAR YOU THEN WILL THEY....HMMMMM
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Avatar_m_tn
I am one month away from being done! I have been reading about how long I should expect to get back to normal, and a question comes to mind ...

How many of you adjusted your diet prior to and during the treatment?
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4950316_tn?1394188185
Ah, 'tis good you are there.
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Avatar_m_tn
To someone in the medical field it is depressing but not surprising to here so many posters blown off by their docs when mentioning their long lasting side effects. while you may find one of the few old school crusaders out there, by and large todays physicians: 1- are about volume.. that 10 minutes of face time you waited weeks for- be aggressive. 2-  are about the clinical aspect of medicine- if it can't be measured.. it can't be. And 3- medicine in general (physicians in particular) are about liability cover... they will never admit they could have been involved in patient harm.
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Avatar_f_tn
Yes - interferon/rib took my viral load from a high number to "undetectable".  That was 7 years ago.  I'd expected to feel better because the C was gone.  However, year after year this fatigue lingers, depression ever present, aches/pains/headaches, strange blank spots in my memory and so on.  

One day it occurred to me, could this be from the treatment?  I believe yes now that I've read countless stories from others.

I knew it was a harsh drug - but took the chance of using it to clear the virus.  It did that job, so I do not regret my decision.  Meanwhile, I know now I'll never be the go getter I was.  That in itself is a bit depressing - however, knowing what the problem is now I can read & research this specifically.
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I am 12 years after treatment. I am sick more often than not. I have achy joints in every joint in my body. I think the newer treatment must be better! I never knew I had Hep c. Not ill then. But I sure am sick sore and mentally & physically ill now !!
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Avatar_m_tn
I'm an insulin dependent diabetic of 28 years in the 5th month of tx. I have no pains just a little anemic and "watery head" is what I call it. I walk a lot and jog a little at this point. I have either 59 days or 29 days left depending if it works again at week 24.
I have learned in life that there is nothing that will give you long term pain more than pain medications. They are poison to the mind and body.
If you have pain try exercise and if it hurts too much do variations like jogging, walking, biking, roller blading. I'm 57 and plan on running a full marathon non-stop next year. I did a 1/2 marathon non-stop last year and finished in the middle of the pack.
But for 10 years in my past I had knee pain so bad that I couldn't jog at all. Only when I began doing squats, roller blading, tread mill and biking was I able to gradually get past the point where my knee no longer acted up. Once I was able to jog 7 miles I was able to then get up to 16 miles non-stop.
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Just finished treatment a few weeks back, I was fairly side effect free for most of treatment.  Other than the third month teleprovir back in dec I fealt great and tried to get back t.o normal activities in July while still in treatment. By the second week of keeping to a work our regiment I started to fatigued get joint and muscle pain.  Now that I'm off treatment I'm still feeling joint and muscle pain. I'm going to try and start working out again in hopes of building some muscle and hopefully getting rid of the pains.
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  Good, but go slow and dont over-do it. I did manage to finally get rid of the joint pain by building myself back physically, via bike-riding and walking, so my joint pain finally disappeared, gradually, by the 8th month post Treatment.
   It also helps mentally, to get out of the house and exercise.
I am fairly sure the Interferon hasn't left me with any permanent side effects, so I am very grateful for that.
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I developed pre-diabetes 6 years after clearing the virus, Type 1A, 48 weeks.  I have lost 15 lbs and am activly exercising so I no longer have pre-diabetes but I have to eat a diabetic diet for the rest of my life and I could slip back into pre-diabetes and worse become forever a  type 2 diabetic.  I highly suspect the interferon treatment which destroyed both my thyroid function and testosterone, both which I replace the rest of my life, for thyroid a pill every day and low test. a shot every week.  Anybody else having these  glandular experiences?
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yep with you there.my life is in a foggy painful limbo since pegintron/riba 7 years ago. can't deal with day to day life,spend most of my time on the sofa,don't sleep more than a few hours waking with night sweats,vivid nightmares,itchy legs,cramps-on waking can't use my hands.Then every few months I'll sleep for weeks just waking to eat and drink,with a constant jetlag type feeling where I can't wake up or clear my head.Even minor irritations stress me right out,my balance is out,my feet are so painful I often can't walk more than a few paces-been diagnosed with Post Interferon Syndrome,fibromyalgia,chronic fatigue syndrome-all a bit vague-altho I'd been infected for 20years apart from painful knee joints I had no symptoms and no fibrosis and I attained SVR in 2006.I have always been careful with what I eat but since treatment have no appetite,dry mouth,dry eyes and permanently swollen lymph glands in my neck.I too am incredibly lucky to have a supportive spouse.Am tired-enough for now!
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I am sorry you are having these problems.

Have you seen a Rheumatologist? If not, I would suggest a thorough exam by a Rheumatologist and complete testing for any and all autoimmune disorders.

If you have a specific autoimmune disorder (or even two or three), the sooner you are diagnosed, the better, and treatment can be started.

Best of luck.
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747988_tn?1396540478
hi-yes seen a rheumo but nothing conclusive-have been dx with Post interferon syndrome
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this is my 2nd time going on the interferon/Ribaviraan tmnt. I also am geno type 2. i dont know about this telapavir, as my fist go around was in 1998. Do you know how long this teapavir has been out and did you yourself do the 4weeks of telapavir followed by the rest.  Thank you.  I am 53 years old, and back in 1998 the telapavir wasnt around.  I myself dont like the idea of it.  when i did my 6 month of interferon and riibaviron, it worked and no side effects, except very fatigued and week during the treatment. "if it isn't broke don't fix it".  Just think about things like the Trans derm Mesh!  I am choosing to forego the 4 weeks of Telapavir unless  someone can change my mind. Thank You  Carie
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I don't think Tony-z is still around. He has not posted for a long time. However, I can respond to your question about Telaprevir and treating Genotype 2.

Telaprevir has been out since mid 2011 and is a Protease Inhibitor which is  used to treat Genotype 1, not Genotype 2. So you would not be taking Telaprevir.

Currently, the standard of care for Genotype 2 is Interferon and Ribavirin for 24 weeks. However, there are new medications that are awaiting FDA approval and they may be available in early 2014 or sometime in 2014.

Gilead's treatment, which should come to market in the next few months, contains no interferon (all oral), has fewer side effects for most people, and has the highest cure rate ever for Hepatitis C genotype 2.

Genotype 2 is the easiest type of hepatitis C to treat successfully. The study data with the new meds shows a relatively high cure rate for Genotype 2.

Have you had a recent liver biopsy ... do you know your liver fibrosis stage? Did you relapse on the last treatment in 1998 or were you a non or partial responder?
------------------------------------------------

"FOSTER CITY, Calif.--(BUSINESS WIRE)--Apr. 8, 2013-- Gilead Sciences (Nasdaq: GILD) today announced that the company has submitted a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for approval of sofosbuvir, a once-daily oral nucleotide analogue for the treatment of chronic hepatitis C virus (HCV) infection. The data submitted in this NDA support the use of sofosbuvir and ribavirin (RBV) as an all-oral therapy for patients with genotype 2 and 3 HCV infection, and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection."

Also see the following article as it discusses treatment experienced patients and their outcomes.

http://www.gilead.com/news/press-releases/2013/4/data-from-phase-3-studies-of-gileads-sofosbuvir-for-hepatitis-c
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Hi all, I'm a 46 yo female DX w Hep c type 1c in 2009 and entered an experimental study in march 2010 where I received pegInterferon injections and oral ribiviran and the then experimental drug boceprivir. I was on tx for 48 weeks and completed in march 2011, I managed to work full time as a nurse Thank mostly to my employers setting my schedule around my injections so that I was off the same days each week. I did miss a LOT of work though. I was also on HIGH doses of pain medications due to the aggregated arthritic and gout type side effects and think this "kept me going" . I remember one pain dr telling me he could get me SSD and like a fool I turned him down.
Now here I am 2 + yrs post tx and instead of feeling better I am over time feeling worse. At a little over a yr post tx I became severely depressed suicidal anxious and agoraphobic and unable to work and have not worked since. I feel like I lost 100 IQ points, I can't think, concentrate process new information. And my memory is GONE. I am so tired all the time everything  hurts, I feel WORSE now than I did during tx. I have had 2 horrible bouts kidney stones and hydronephrosis, I lost 25# during tx and gained back almost 60#, I am 20+# HEAVIER than when tx began and I barely eat, when I do I feel bloated and pregnant, did I mention the pain. I went OFF the pain meds as soon as tx ended and if I mention going back on I'm treated like some junkie drug seeker. No dr gives any credit to my symptoms. I still attention post follow up tx study appt at one of the best liver centers in the county. They say 2 yrs post tx you can still suffer, I'm going on 3 yrs still non detectable since 8 wks into tx so I guess I'm cured. But the cure was worse than the disease and tx combined. Did I mention ive lost my mind?...I am kicking myself for NOT taking that dr up on offer to get SSD, or for not applying sooner. I am financially ruined, homeless and living w MY daughter because I just could NOT work anymore and lost my job was denyed unemployment etc and can not hold a job if i wanted To, and ive drained everything to the point I have NO option BUT to apply. Ive never heard of post interferon syndrome. I am praying I'll get approved, I guess Ill have to call one of those disability lawyers from TV to help me fight for it. I take care of my small grandson full time and its hard having the energy and patience to keep up with him. I just want to feel well again. I have taken and self diagnosed myself with everything from fibro ADD to depression. I have taken antidepressants and neurontin, can't deal w negative side effects ON TOP of feeling so horrible. Nothing helps for long and I just feel hopeless. I had a feeling  all this was related to the pegI but finding this site and others has confirmed it for me. Seems like I'm gonna have a hard time convincing my docs tho, switched PCP during tx cuz my PCP said hep c and tx had NO side effects. I told him a million people who report experiencing the same must be delusional with me...thanks everyone for posting and helping those of us still searching for answers
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Avatar_m_tn
I completed a 52 week treatment program several years ago now.  I went through the normal side effects during treatment but have had additional side effects since then.  I have had several surgeries due to torn ligaments/cartalidge.  Most of the doctors have said that there is no connection.  After having 7 surgeries for joint damage with no reason, I finally found a doctor that acknowledged that there is likely a connection between the peg-interferon and ribital treatment and my injuries.

Fortunately I am hep-c free. All I can say is hang in there and never give up.
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Avatar_f_tn
100% agree with you. The German and Irish Anti D studies also only show 0.5% after 20 years that went on to cirrhosis, we get told 20%, Deb
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Avatar_m_tn
Is this the Irish study you speak of?

http://gut.bmj.com/content/49/3/423.full.pdf+html

22 years after infection, in 87 women:

- NO cirrhosis at all
- few if any hepatic manifestations
- only after diagnosis do they feel psychological distress and loss of quality of life.

And the CDC urges everybody to get tested. Wow.  Gotta pump up that Gross Domestic Product.  

If that's the Irish, I'd love a cite to the German (or there other Irish, if the above isn't it).

Thanks!

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In the 1970's Ireland and east Germany (as it was then) were given contaminated batches of Anti D ( infected with hcv) there are a few German studies and Irish, both studies mirror each other, the 20 year and 35 year German studies have more patients, very interesting,

Take care Deb
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Avatar_m_tn
What an amazing study, the German follow-up after 35 years. Thank you so much for bringing this to our attention.  

http://onlinelibrary.wiley.com/store/10.1002/hep.26644/asset/hep26644.pdf?v=1&t=hyhyiu22&s=ddfcedc975b4999720f5f089f8fe7bde39c8aae3

One important fact that all should note is the significant increase in likelihood of cirrhosis if one is overweight (2.3x more likely) or obese (5.7x more likely).

28 of 197 women who chronic Hep C (which is pretty much what we all have if we haven't SVR'd) developed cirrhosis after 35 years.  7 of those were labeled as alcoholic cirrhosis.  

So put another way, 176 out of 197 (89.3%) HAD NOT developed hepatic cirrhosis 35 years after infection.  

9 died of HCV related liver problems.  That's 4.6%.  Again, to put it another way, 95.4% had not died 35 years after infection.

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Avatar_m_tn
One more:

If one stays at a healthy weight, one has only a 4% chance of cirrhosis after 35 years.

Note this study concerned women only who had been infected with genotype 1b
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Avatar_n_tn
Berlynn, I feel as though I wrote this post.....I am only 19 months post treatment,,and suffer with side effects, I am still working,for fear no one will believe me.as I look well.have no idea how to apply for disability, fatigue plagues me and cofussion an brain fog torment me. I am a Reiki practitioner and practice yoga as well, this helps a lot. I would agree! I did not SVR the virus, i start tx. again in Oct. How does one go about applying for disability?I have read the guidelines for ssdi. How can you prove side effects no one can see? I feel like people treat me like it's all in my head... it is so frustrating. Any suggestions or advise would be appreciated. Thank you. I was able to identity through your post. Sincerely '~Pamalous
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10723204_tn?1412281333
Boy, I wish I would have known about this in 2004, when I found out my interferon/ribavirin treatment had failed (viral loads were zero at end of treatment, but six months later they were back and doubled).  I did okay through treatment, though itchy, fatigued, achy and anxious.  But I treated myself well and had lots of support.  The doctors always said, "You'll feel better when the treatment ends."  I so looked forward to that BUT went into the darkest place of my life ever when treatment ended.  And this was when I was thinking I'd been cured.  Horrible depression where I stayed in bed, getting out only if necessary.  This lasted a couple of years.  No one told me about post-treatment depression.  It was like nothing I ever experienced or want to again.  I found many ways to feel better slowly, one thing at a time -- therapy, prayer, eating more whole foods and drinking water, taking walks, having a friend help me order my house and working alongside me.  Brain fog was so thick!  Now, though not cured, I live well.  I never, ever want to go back there again, but now I'm being offered the new treatment and have some reservations because of what I went through following the old treatment.  Has anybody heard news about the studies long-term for the newer treatments?
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Avatar_m_tn
There are no long term studies for new meds, just anecdotal accounts of similar problems that, with Sovaldi, seem to arise about one month to six weeks post-treatment rather than 3 month or so post-treatment as with INF / Ribavirin alone.  
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