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Hepatitis C: Post Treatment Issues Community
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Avatar universal

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. 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.
269 Responses
Avatar universal
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
Avatar universal

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
Avatar universal
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.
Avatar universal
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
Avatar universal
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
Avatar universal

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
Avatar universal
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.
2 Comments
I have been under the assumption that I had fibromyalgia ever since my treatment for hep c in 1995, but recently I ran  across a post talking about post interferon syndrome and the lists of symptoms  for that condition more closely resembles the hell I have been going through ever since my treatment. I was taking 5 million units of Interferon Alpha 1A by intermuscular injection 3 times a week for an entire year.  
Since then I have battled chronic fatigue, severe bone pain, chills and sweats. I have been diagnosed with two autoimmune disease, Giant cell Arteritis and polymyalgia rheumatica. I  also have thyroid issues and heart disease. Additionally the list of issues includes trouble with my eyesight, headaches and memory problems. I also have gastrointestinal issues and sleep problems. I have  swollen  Joints that come and go, and wake up with numb arms and feet. I  also have raynauds  and God knows what I am forgetting to list.  What I am trying to find out now is does anyone know if Post Interferon Syndrome a recognized illness?
You have added a comment to a thread originally started in 2004. You might be better served to start your own thread. But in any event I seem to be one of the few hanging around to comment these days since the new DAA meds like harvoni have come out and many are now being cured.

I was able to find this information

https://www.healthline.com/health/hepatitis-c/interferons-long-term-effects

But the best thing I can suggest is to work with your doctors. I’m not aware of an officially recognized post interferon syndrome per say. As for myself I treated 3 separate times with interferon based treatments each one was 6 months in duration but unfortunately I was a null responder to those treatments. I was finally cured 4 years ago after having hep c for 37 years and developing cirrhosis 11 years ago as a result of my at the time 30 years of hep c infection.

Best of luck to you I hope you can find relief from your symptoms.
Avatar universal
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
Avatar universal
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.
Avatar universal
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.
Avatar universal
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
Avatar universal
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
Avatar universal
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.

***@****
Avatar universal
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???
747988 tn?1396540478
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...
Avatar universal
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.
338734 tn?1377163768
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
Avatar universal
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.  
Avatar universal
"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  
475300 tn?1312426726
""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
Avatar universal
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  

  
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
Avatar universal
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.
Avatar universal
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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