Hepatitis C: Post Treatment Issues Community
long term after effects post interferon
About This Community:

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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214 Comments Post a Comment
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747988_tn?1396540478
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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1815939_tn?1377995399
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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Avatar_f_tn
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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1815939_tn?1377995399
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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Avatar_m_tn
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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Avatar_f_tn
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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619182_tn?1221342788
I NEVER SUFFERED A DAY OF DEPRESSION IN MY LIFE UNTIL MY HEP C TREATMEN AFTER 2 YRS OF TREATMENT I CLEARED THE VIRUS BUT MY TREATMENT WAS A NIGHTMARE. HEAVY DUTY DEPRESSION. NOW, 6 YRS CLEARED I STILL SUFFER FROM MILE TO SEVERE DEPRESSION. THE VA HAS ME ON MEDS AND THEY DONT WORK. ANY SUGGESTIONS? I AM SO TIRED OF THIS
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Avatar_m_tn
Hi, I did 6 months of the Interferon/Pegasus treatment from June 1/05 to Nov.16/05 & felt like crap for years after but eventually most of the symtoms (symptoms) of the treatment disappeared except for dry, itchy **** that turns almost black where I did my injections. Is this common for something that happened almost 10 years ago? It seems to get worse during the winter for some reason. The skin on the right thigh turned dark black for an entire year when I accidentally injected when there was blood in the needle. It eventually went back to normal (sorta) but it still gets dry & darker in colour the drier it gets. It happens on both legs but the right one (where I screwed up & injected Interferon 9.5 years ago) is worse. Been putting Cortizone cream on it for too long IMHO. I don't see my liver specialist anymore cause my blood reads negative for an active virus & my GP knows virtually nothing about Interferon so he has no clue if this is common. Does anyone else have this issue years after the treatment? Only where I did my injections does this happen. Just when I think it's finally gone, it starts to get dry again. Ugggggg!! Any help would be greatly appreciated!! Ty.
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253566_tn?1219683299
Hi to you both.

This is a crazy old thread and you both have a very specific issue which would be better to post a new question using the big green button at the top "Post a Question".

YOURPHOTOMAN, anti-depressants are really difficult, if that is what the VA has you on. Sometimes they need to be changed many times to get right... please post a new thread for more help.

Itchy64, never heard of this but again please post a new thread for more help - probably best to see a qualified skin expert...

frank
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Avatar_m_tn
i contracted hep c from improperly sterilized tattooing equipment as a 19 year old back in 1990. in 2006 i started 48 weeks of interferon (pegasys pegatron) at that time i was a successful poultry farm manager. being the sole operator and manager of a multimillion dollar broiler farm with 150 000 to 175 000 broilers was my life. i had been involved within the poultry industry for a decade or more and had climbed my way up the ladder to become a manager. life was good and i saw a chance at improving my health and prolonging my life by ridding my body of this virus. i was told of the possible side effects and thought that i might suffer i few of them and would be able to handle them. boy was i wrong! i ended up suffering from every side effect and it was brutal. i became increasingly lethargic and my inability to preform my chores and other duties began to snowball. i ended up losing my job and then my mind. i had been a provider for my young family and was now a dependent. luckily my wife is a nurse and we were able to survive on her salary. we had to move into a crap hole in a bad area and i became increasingly depressed to the point of suicide. i battled the depression without much luck for three years and ended up using drugs in an attempt to dull the pain, the hopelessness, the despair and the utter feeling of failure as a father and a husband.for three years i battled with the government to receive my disability pension as having zero income added to my depression. i totaled several cars in the span of those three years and had to stop driving. after being caught trying to hang myself by my wife for the second time i was given an ultimatum. seek medical help or give up on my family. luckily my wife is an awesome, loving, caring and devoted woman and mother who was unwilling to give up on a 20 plus year relationship. so i sought help and was able to pull myself out of the hole that i thought would be my grave, so to speak. under the approval of several doctors and specialists i was approved for my disability pension. this was 2009. its now 2014 and even-though i have gotten much better i find im still not myself. i still battle depression and have since been diagnosed as bipolar which i had never had a problem with up until treatment. also due to the severe pain i was in all the time i was prescribed hydromorphone. i became increasingly dependent on opioids and have just recently gotten off of that particular medication. this was just another cog in the wheel of despair that i had to endure and overcome. and even though i have made great gains in recovering my old self i find that even now years after the fact i still struggle with fatigue, headaches, depression, lethargy, insecurity, weakness, confusion, memory loss, headaches, joint pain, insomnia, loss of appetite and other lingering side effects. i still dont have the same zest for life i had before and suffer from the guilt of not being able to be the father to my sons that i was before hand. this is the most punishing side effect of all as i feel that my desire to fix my health has cost my children their father to some extent. and even-though i lost much of who i was and what i was. i am also both grateful and aware of what i do still have. my wife and kids. and after its all said and done the reality is that they are the only things in life that ever mattered and im so very happy that i was able to get help and that they still have their daddy even if hes only half of what he once was. and now they tell me that its returned, most likely because i had to stop treatment at 40 weeks. and that i will have to go through treatment again. but this time im told its a much shorter process of 8 weeks instead of 48 and that there's a possibility of an even newer treatment that does not include interferon. and even though last time was unbearable i am willing to do it again if it means beating this disease. but i am still very afraid and wonder if i can do it. has anyone here tried the new treatment? what can i expect in the way of side effects? any info would be much appreciated  
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Avatar_f_tn
The current treatments depend on your genotype and liver status. You did not write yours.
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317787_tn?1424342395
Hello there, I am so sorry to hear of your problems, I can understand.
If you  post your own question you will get more responses.  Just click on the Post a question at the top of the page.  You can copy and paste this there.
Yes the new treatments are much less duration and are supposed to be much easier.
Take Care
Dee
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Avatar_f_tn
I, like you, had the disease for 20 years before I felt it's affects. I was originally diagnosed as non A non B so was surprised to learn it was the same as Hep C. I had treatment in the mid 90s with Interferon A and yes, glad to be rid of the virus, but sad to say my quality of life is very low. I have almost zero energy most of the time, the aches and pains, depression, feelings of hopelessness, and the struggle to try to at least appear normal and functioning to those around me is often overwhelming. Ta2joe just described much of my own experience in the 20 years post treatment...though I have never gone so far as to attempt suicide...I've considered it regularly...but I can't get past the fact that suicide is a long-term solution to a temporary problem...and even though the combination of symptoms are anything but temporary, they rear their heads in different ways at different times, so in that respect, they are temporary...and the real reason is that I couldn't do it to my family...they don't see my illness as a problem...they see it as a small part of me...I realize that's the truth of  it, and the health issues are to be endured quietly, between me and me...oh but it's hard...feeling like I'm being lazy because I can't do my chores, zoning out from what's going on around me because I am just a spectator...often feeling like a brain in a useless body...experiencing mental quadriplegia...there has to be a way to improve the situation...a combination of vitamins and minerals or a diet that will help balance the brain chemistry...but if the medical industry has it, they aren't telling...I'm just hoping someone has figured it out and can share their knowledge. I did find an article by Russell Blaylock MD (a Neurosurgeon) who goes some way to explaining what might be happening in our brains as a reult of the Interferon.

http://interferon.ws/Interferon_Harmful_to_The_Brain.htm
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Avatar_m_tn
I am in the same boat.  I do not think I will ever take any of the drugs again unless and until I see long-term safety and efficacy.  None of the present drugs have shown that yet.  I don't know about Harvoni, but any regimen with interferon and / or ribavirin in it probably kills or ruins more lives, in the long run, than it saves or improve.  The VAST majority of folks with Hep C will not die of Hep C if they don't treat.  

Part of the reason I will not take them again is the ongoing struggle to maintain functionality.  I couldn't take anymore harm to my psyche and cognition and have lost everything already in the years it took to recover at least somewhat.  Very few medical professionals "get" it.  I am frankly more scared of being killed by the drugs than I am by the Hep C.  Treatment already took at least 15 years off my life by accelerating cirrhosis, and I fight infection all the time.  I spend an hour or two of every day fighting to stay alive, really, and have for the last 5 years (dealing with peripheral neuropathy and diabetic-like feet, yet I have no diabetes; juicing; medical care; resting; researching; creams; salves; cascade injuries originating from treatment effects; tanning beds for skin disoders).  That's what 75-year old men do, down at the gym - they fight to stay alive.  48 - 53 year old men don;t.  I was an absolute bear before I treated.  Strong powerful confident skilled sharp.  

I don't trust anything Big Pharma or standard American western medicine says anymore.  The bloom is off the rose of the whole model of "1) diagnose patient  2) Disregard  diet  3)  Insert chemicals. "  There are other ways of living and treating. Our present system is driven primarily by corporate interests and profits, not a desire to create strong, healthy happy citizens at reasonable expense.

EAT A NON INFLAMMATORY DIET.  If you are still eating fried foods, sugar, and standard grocery store: meat, bread and dairy, you are making yourself feel bad, physically and emotionally.  I know you raise chickens, and perhaps they're not organic (and maybe you're rolling your eyes right now), but non-inflammatory super healthy eating is really important to people whose immune systems have been whacked by treatment.  If you could stick to a regimen for even three full days it would probably make you a believer.  You won't necessarily always do what you should re: food, but you'll know what can be done and what results can be obtained.  

Carbs are your enemy.  They are.  They affect your brain and your body.

Non inflammatory diet will make you feel better, physically and mentally.  Check out "functional medicine" and /or Amy Meyers MD in Austin.  She's a saleslady but the principles are good.  Might also think about / tinker with LDN therapy.  Functional med docs administer it. Low cost, often helps.

Read "In Defense of Food" ("Eat food. Not too much. Mostly plants.") and also, perhaps, watch the movie "Fat Sick and Nearly Dead." Kind of strange title, very inspiring movie nonetheless.  A guy named John Pagano wrote a book long ago on a diet to help with psoriasis.  He frankly admitted he knew not why it worked, only that it worked.  He made a cook book too.  Might want to read his book.  His theories are now being validated.

Finally, recent research suggest that fasts from 2 to 4 days in length can, to roughly quote, "Significantly reduce the mortality arising from chemotherapy" by re-setting the immune system.  I haven't yet done this but intend to this spring when weather gets warmer.  
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619182_tn?1221342788
6 yrs post hep c rx and I suffer from severe depression. Why???? I need help badly
***@****
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747988_tn?1396540478
interferon causes depression that occasionally does not resolve post treatment.I agree with Frank that you should maybe try changing meds or having some counselling.I also suffer with interferon induced depression which has not improved after antidepressants and counselling and life has lost its colour,I know how you are feeling.
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619182_tn?1221342788
2 years after my post I am in such bad shape. Now, my depression is so severe I absolutely hate this. I'm really scared. Can anyone help please
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Avatar_m_tn
It's not just depression. The docs use that label.  That's not exactly what it is.
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747988_tn?1396540478
no you're right-it's more a loss of self.
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Avatar_f_tn
Just an FYI on my situation. I've been seeing docs ever since my tx 3 years ago for horrible side effects including bone/muscle pain, neuropathy in feet and legs, muscle weakness, exhaustion, dry skin and eyes, vision problems, and most of the ones we all list. Docs have suggested Sjogren's, Fibromyalgia, polymyalgia rheumatica, and all those autoimmune types that also have no clearly specific tests for dx. My blood labs always look wonderful including nothing to speak of for inflammation.

My pp balked at my request for a referral to see an endocrinologist, but with some outlandish pressure, he complied. My thyroid tests always come back normal until the endo ordered the labs with a 12 hour fast and an a.m. draw. Does it make all the difference? Idk, but they were not all normal this time and hypothyroidism seems to be the issue.

The doctor told me that thyroid issues and even low Vit D can cause bone and muscle pain. He said he was going to get to the bottom of the problem. I have a forty year history of occasional kidney stones and he was very upset that no one has determined that cause which is often tied into the TSH, Calcium, Vit D stuff. Doctors have always ignored my slightly "off" numbers for kidney issues...why? Idk.  I have totally lost faith in the medical profession as I have always done my best to pursue answers for my issues with the best of the supposed best including the Mayo Clinic.

So we shall see if treatment for my thyroid issues helps, in the meantime, if your thyroid tests are normal, or they have not been done under the supervision of an endocrinologist, I suggest you try one.
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253566_tn?1219683299
this is really interesting because I have been supervised by a couple of endos including one a decade ago who was suppose to be a top uni teaching endo!

Both just ran the test by the books, sorry I take that back, the one I saw last year was sooooooo awful wouldn't even run any test so I had to ask my gp to run test suggested by the folk here on the medhelp forums!

I eventually fired the endo from last year after learning her office lied and then this doc lied to me. I asked for an investigation by the hospital running her office and the lies they gave the investigators were so stupid BUT of course they accepted the bull.

I have only heard similar stories to mine about endos so you are very lucky to find one that really cares!

I will probably have to do an ultra sound on my thyroid some time next year but have no idea what to do if they find something...
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Avatar_f_tn
When you say, "..just ran the test by the books...". what do you mean? Not with a 12 hour fast and early a.m. blood draw? I don't know what "the books" say about tests. I just know this endo is running so many tests for adrenals, parathyroid, thyroid, Vit b12 and D, kidneys, all kinds of hormones plus many of the usual blood chemistry levels. Tests that no one including the rheumatologist ever ran to rule out anything else in order to conclude a fibromyalgia or polymyalgia rheumatica dx. I just don't think anyone really cared to look far enough? I'm just grateful to hear a doc say, "We will get to the bottom of this" instead of sending me off with opiates and steroids and their sad sympathetic face. I did a long search to find this doctor, he was recommended at thyroidchange.org. Their site won't recommend doctors who don't offer all of the right tests, or who believe that the ranges are the end all be all for the final word. If you have the symptoms, they will find out what is causing them. At least I am hoping....
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253566_tn?1219683299
Thanks for that site. There is one that might take my insurance and see me/within my area.

What I meant about "by the books" is that this type of doc that is not interested in looking at a patient as a human but only as a text book. #1 We do these test first and if they come back OK = end of story!

Again, the most recent Endo was so freakin lazy she wouldn't even run specific test I asked her to run that my GP had not run. I don't think my GP ran the TSH and a few other specific test but this Endo refused to run them. I had a positive results biopsy 98.5% (or something like that - positive) but this crazy Endo only talked about the negative! She didn't know that I had the report in front of me while I was on the phone!

My GP was outraged and said I would never have to deal with her again! He ran the test I asked for but I didn't know about the 12 hour fast early am blood draw. I am taking Vit D but my D results are OK.

I will share my CRAZY Iron results of this past summer.

I don't have the numbers in front of me but basically the story goes like this:

Early summer extreme anemia at 6! I believe my GP said the minimum should be 40 and 100 is best ... He said 6 is the same as Zero!

So I did a IV of Iron *I think it was a course of 3X over a week or 10 days. and then we tested my iron numbers after a month. My Iron came back around 26 or so after the IV.

Then my doc suggest that I should do a course of oral Iron. I wasn't really happy about this as in the past supplements had not done much for me but actually clogged up my system - I eat very healthy and in the past when I quit all the supplements I was taking my body felt a LOT better. ANYWAYS I was on the Iron orals and wasn't feeling so great after two months. Talked to my GP and he said it was OK to stop them... I asked him where he thought I would be with the blood work with the oral. I was SHOCKED by what he said! He said that oral Iron won't really increase anybodies iron much! He said it might remain the same but absorbing oral iron was very difficult for the body & that is why they do the IVs.

I was kind of angry with him actually - putting me thru this! Sooooooo, we do the blood work after the two months of oral iron! And the crazy thing was that my Iron levels went to just over 100.

It wasn't due to the oral Iron but due to the fact that HepC treatment had put my system into such a chaos! This is how it has been for a decade. My numbers go up and down thru-out the year! Finally my GP believes me!
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Avatar_f_tn
I am surprised that your GP did not determine whether your anemia was an iron deficiency anemia or an anemia of chronic disease which is not due to iron deficiency and will not be helped by iron supplements, oral or IV. (http://www.irondisorders.org/anemia-of-chronic-disease) During hcv tx hemoglobin can go dangerously low, but you are long past tx, right?

It sounds like you need some better doctors, or at least one with the attitude of "we will get to the bottom of this" and who won't throw you to the curb and give up!

I hope you find a good endo doc near you and can get everything checked out. There is a lot of good information at the website I gave you especially about testing. Good luck and keep me posted!
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Thanks for the advice... Yes, long past tx, and "cured" but with a whole lot of PIS!

I do like my GP but he is totally overwhelmed with his practice! He is young and excited by what I bring in but I have to do the research!!! and I really am not that knowledgable... where I live is a tiny area and I think the docs here are somewhat nervous about having an informed patient.

I can get to the BIG city where there is one Endo on your list so I will do some research on that doc along with my GP about her.

I do believe that I have a chronic condition that is inflammatory in base but just can not get any test to prove it!

This is what I was told at the University of Pittsburgh Liver Center - that my system was in such chaos numbers would change and it is true.

I will see what I can discover about this Endo in PGH and hold out hope that she is Very Good!

Thanks again. f

btw, in the meantime I am on my second month and up to 2.5ml of LDN which reduces inflammation thru-out the body & crosses the brain barrier = a study showed that those who suffer from chronic-fatigue had inflammation in the brain.

This past month has been a huge stressful time and maybe the LDN has helped a bit but then I am also taking B12 & large doses of the other Bs as well as D. That is all the supplements I am taking...
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I, too, have all "normal" tests for everything until this 12 hour fast test. So I know the frustration of not knowing what is causing what!

I just got the call from the doctor's nurse this evening...they are calling in a Rx for Snythroid and I need to up my Vitamin D, it's low.  More follow-up to come, but I am to start treating the hypothyroidism right away. Lord only knows how that will go; hopefully, I will see some improvement....and hopefully not more problems! You never know with us PIS people!

It would be great if your GP could talk to the endo before you make the long haul. Maybe give some background and ask if she will do the specific tests as outlined on the thyroidchange.org site, or see if your GP would do the 12 hr, a.m. draw? (I could give you the entire list of what was ordered.) Maybe your GP could also get a feeling for the endo's "enthusiasm" to be a true medical detective? Let me know how it goes.

Yes! My next step after the endo was a new gastro guy who is listed on another site as being open to prescribing LDN to folks like us. I have followed those posts on here and did start to research it. I guess not every doctor is open to prescribing it. I did get the referral to him and I will see how that goes; however, I think I should give this synthroid a chance before I move forward on that.

Besides upping my Vit D I am also going to start taking B12 again. I think you are very wise to stick with those two...can't go wrong. I just cut back so I could see my baseline without supplementing, but now I will get back to them.

Again, keep in touch. See if your GP will help you "vet" the new endo, or order the preliminary blood labs. It's a long way and more expense, and you don't want to waste any more of your resources!

Take care,
Faith
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I think we are on the same page.

Good luck with the Snythroid! Let us know how that goes. Doesn't that sometimes have to be adjusted?

Us PISsers are in the great catch 22 with so distrustful of docs but finding them so necessary to help us!

On the LDN path - I couldn't find a doc to write me up so went the Thai full dose which I actually highly recommend - of course with the blessing of your docs & my GP is really excited by it all (he can't write it up in PA)! Doing the full dose thing means that you are able to liquify it then control the dose yourself without the fillers of LDN specialty pharmacies and those costs! There is a lot of money being made on LDN and a lot of bull on the forums which one can get away with since there is little research BUT a pharma just bought the rights to LDN so things will be changing in the future.

I did have a big problem with PM dosing and vivid dreams! I had to switch to AM dosing... and after nearly two months the vivid dreams have slowly subsided. BUT if you read most of the Pros on the forums they demand PM dosing which is total bull... it is based on lab mice tests which has nothing to do with human testing. So if your gestro demands that you stick with PM dosing run!

Well, I went off on an LDN tangent and it is crazy late here so I better end it there for now... more later.

Nite all, f
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I didn't see this until after I wrote back to your pm. Interesting to hear about your experience with LDN. We will keep in touch?
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I was cured of my HepC2b 4 yrs ago. I still suffer from fatigue, joint pain and personality changes. I am not depressed but have panic/anxiety disorder. My sex life is gone! I have no interest what so ever!! You are not the only one who wonders about this treatment. I also have memory and vision problems.
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I sometimes wish I had waited for the newer treatments. I wasn't sick when I requested a full blood panel and they found hep c plus my liver enzymes were normal. I felt great. Now I feel like crap.  The joint pain is bad and I started a new job working 6 days a week. Sure I am glad my Hep C is gone but I wasn't sick to begin with!!
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My feet are killing me and have been since finishing treatment!!! I have to wear Skecher shape ups even to church. Mood swings sometimes I think I am going nuts!!
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I am really glad that you have found some answers...help.
I know that when the thyroid is checked the most important thing to check is the Free T3 and Free T4.  While TSH is helpful it is not the only test that should be done.
I have found that what one doctor says is normal is not normal for me.
I started getting copies of all of my blood work so that I could figure out where on the range I felt the best.  
I hope you get relief.
I have read that many many people have problems with their thyroid after Interferon.  Sometimes it happens during tx, right after or even months later.
Thank you for sharing your information.
D
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Hey Dee and All,

Yep, I always get a copy of my bloodwork as well as MRI or whatever I can get!

I am lucky that the main hospital most of my work is done at never charges - as sometimes I like to have the records before I see the doc. Of course I can get them from the docs office...

The time I went before the second SS Disability Judge, to contest the first Judge and his crazy decision, my records were so great in number that they could not be carried in but had to be wheeled in on a cart! I was kind of shocked! LOL! And that was nearly a decade ago.

I just got an iPad Air2 and it is really crazy light! So I am going to start bringing it to my appts - I still prefer paper! but I am going to start making a data base of all my numbers over the years.
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I too have been checked a couple of times while trying to get back to my ole self since tx. I found this endocrinologist at thyroidchange.org. They have a national database of docs who supposedly do all the right tests.

Regarding reference ranges: They were different the last time I was checked than from this time. A lot of conversation and controversy going on amongst the endo docs lately.

Sad to think that so many of these symptoms are getting written off as fibromyalgia and other things that have no real treatment other than treating the symptoms (e.g., opiates, steroids, etc.).

Mine is also not autoimmune Hashimotos (he tested that as well), so who knows what caused it? One can be on that path for years and it takes a while to become symptomatic sending one to a doctor, and then most of them miss it.

I don't know yet if this is going to make a difference for me, the effects of tx take several weeks and then there might need to be adjustments. The endo said all of my symptoms were those associated with hypothyroidism which can be many or a few, and varied for each individual.

We shall see....
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Hi so i didn't know where to write or who to ask but i found this thread, i was just diagnosed with hep C , I'm a a very very very early stage. and i was wondering if anyone u or anyone here knows who has tried alternative medicine such as black seed oil , and raw honey , and similar organic natural things.

I'm really scared of the treatment and i wouldn't want to have severe depression, I've already suffered from severe depression and just started maintaing a healthy state of mind. i feel like if i take interferon my life will end.

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Hi I just saw your post, sorry. There are new treatments that don't include interferon. I don't have info right now but you should check for new drugs for HCV approved in Egypt. I will check too and come back. My computer is down. I am on my cell, it might take a while.  dee
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What type of HCV do you have?  I see Gilead is giving Sovaldi to Egypt with a 90% discount. It would be about $900 for 12 weeks. It depends on your genotype.
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Big Pharma rapes the U.S., and we allow it.  Once citizens, then consumers, now prey.
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Try bupropion / wellbutrin.  Some research suggests good effectiveness for post-interferon syndrome.
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I hear you interferon was awful.  I have had to reconcile myself with the fact that I was able to be cured.  Then I had to deal with the after effects.
I was diagnosed with the beginning of cirrhosis so had to try something.
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Thank you very much for interesting link about 35-year study!

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

If I correctly understand this article, percent of chances of cirrhosis
will be higher for non-SVR and treatment naive subgroups. We can see 3.8% of
cirrhosis for 263 patients, incuding patients with SVR, and spontaneausly recovered. Majority of people with cirrhosis were in non-SVR subgroup and treatment naive subgroup - thus, for such subgroups percent of cirrhosis will be higher (maybe 8%, for example)...
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