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Long Term effects of Interferon Treatment

I endured 2 years total of Interferon and Ribrovirin treatment. It has been 6 years since I have been diagnosed as clean. I have never been the same since treatment. Am I alone.
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Avatar universal
Sorry you still don't feel right after 6 years. I have been off TX for around 2 years and I still don't feel right. I'm starting to believe I have some permanent side effects. I have to add that I did  Telaprevir first 12 weeks along with the regular drugs . I did 33 weeks total tapering off the last 4 weeks.
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Avatar universal
I believe this subject interests you DD. If you haven't yet seen it here it is:

Uninfected Siblings of HCV Chronically Infected Children

J Infect Dis. 2011 Jan 21. [Epub ahead of print]
Strong Hepatitis C Virus (HCV)-specific Cell-mediated Immune Responses in the Absence of Viremia or Antibodies Among Uninfected Siblings of HCV Chronically Infected Children.

Hashem M, El-Karaksy H, Shata MT, Sobhy M, Helmy H, El-Naghi S, Galal G, Ali ZZ, Esmat G, Abdelwahab SF, Strickland GT, El-Kamary SS.

Department of Epidemiology and Public Health, University of Maryland School of Medicine, Baltimore, Maryland.
Abstract

Background. Cell-mediated immune (CMI) responses to hepatitis C virus (HCV) antigens in adults without seroconversion or viremia are biomarkers for prior transient infection. We investigated HCV-specific CMI responses in seronegative children living with HCV-infected siblings. Methods. Children 3-18 years of age living with HCV-infected siblings were screened for HCV antibodies and HCV RNA. Peripheral blood mononuclear cells (PBMCs) were evaluated for HCV-specific CMI responses by interferon γ (IFN-γ) enzyme-linked immunospot assay using 3 recombinant HCV protein antigens. Flow cytometry phenotypically characterized IFN-γ-secreting cells. Results. Forty-five seronegative children and 5 seropositive viremic siblings had functionally viable PBMCs. Among the 45 seronegative siblings, 15 (33.3%) had positive HCV-specific IFN-γ responses, and subsequent RNA testing revealed that 3 were viremic. Compared with the 5 seropositive viremic children, the median number of HCV-specific spot-forming units was significantly higher in the 12 seronegative aviremic children (P = .002) and in the 3 seronegative viremic children (P = .025). Flow cytometric analysis revealed that IFN-γ was synthesized mainly by CD4(+) T cells. Conclusion. Strong HCV-specific CD4(+) T cell responses were detectable in higher frequency among seronegative, aviremic children compared with persistently infected siblings. Further studies are needed to determine whether these immune responses are protective against HCV infection.

See: http://www.ncbi.nlm.nih.gov/pubmed/21257736

Be well,
Mike
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Avatar universal
Betcha there will be a new generation of long term side effects once the PI's hit.  With any luck by then I'll be off somewhere on a warm sandy beach, sipping on an adult beverage thanking my lucky stars I'm SVR.
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Avatar universal
I also read it as being done and SVR for over 6 years.  That is a long time.  I have been off for eight years...and some issues have calmed a bit, while others are still in full force, or increasing a bit.  This is truly an issue that BEGS for serious medical studies.  You can read any number of posts about the exact same set of issues....but where do you hear about any of it in the medical press????  I have not seen anything discussed or written in recent years, anywhere,...much less rigorous studies...or EVEN just patient surveys by the medical community for those off tx for more than a couple of years.  WHERE is that information.  Does anyone want to know what happens...and to what percentage of us...and how commonly....etc???   Ahh...there's the rub.

Hello to all, by the way.  NYGirl, nice to hear from you, and see that you seem to be doing well, and keeping in the loop.  Good luck to all of you out there.

DD
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Avatar universal
Am I wrong in reading it that cadj has been off treatment for 6 years...which is a relatively "long" time.
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179856 tn?1333547362
The drugs DO NOT stay in our systems for a long time as some suggest, but the CHANGES that are provoked by Interferon DO often remain. "

Yes DD is right I should not have taken a short cut to explain this easily and am glad he corrected my post.

But hang in there you've been off relatively shortly and could straighten out in time. I do believe that, we have to believe that.  End stage liver disease is a scary enough concept to make most of us do treatment when we need to but.....if all we ever heard was the bad reports we'd probably gamble way past our 'due date'.
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Avatar universal
Please tell us about your post-tx experiences.  It would be very helpful for you to list any new and different medical or behavioral issues that have developed since ending your therapy.  Especially those that you did NOT experience from the HCV before your two years of treatment.

It is also good advice to look at the prior threads regarding post-tx effects, long-term effects from interferon, etc.  You can decide how much fits your own personal experience and what you feel the causes are.  

There seems to be a wide range of experiences for those who treat, from little to mild short term after-effects, or even no after-effects...and ranging at the other end of the spectrum to those who have had a number of disturbing, serious syndromes develop after doing the tx...especially it seems those that did multiple extended treatments, and/or very high doses of the tx drugs.

Interferon can bring about systemic and cellular changes to many of us, and some of those can be serious. The drugs DO NOT stay in our systems for a long time as some suggest, but the CHANGES that are provoked by Interferon DO often remain.  The drug sometimes "throws a lot of neurological switches", so to speak, that in some cases do not get reset for a long time, or ever.  Immuno-modulators are powerful agents of change, and can re-train our nervous systems to do things we may not like very much.

Some of the more serious problems can include long term autoimmune disease, like Lupus, Arthritic and connective tissue problems,Neurological disease, and sometimes psychiatric issues.  Much of this is described in the fine print in the drug literature...but there have not been nearly enough serious studies done, exploring the real long term side effects of the tx, across the entire population of people who have treated.  There does not seem to be much appetite to do these studies either.  The reasons are probably obvious.

Anyway, we would love to hear a thoughtful, objective outline of what you are now dealing with, since your prior tx, and when the problems began, and how they have progressed.  Have you seen medical experts to discuss your issues?  Results?

Thanks for your comments, and your follow up on this subject.  Do also research the prior threads on this subject.  I am sure you will find many comments from this poster!

DoubleDose
Helpful - 0
179856 tn?1333547362
I treated for 72 weeks which is the common time of extension.  It took me longer to begin to get a semblance of my old self back but it's because I (like you) treated longer than say someone who only treated for 24 weeks.

You have to give it some time, it seems like six months is a lot of time but when you think about how deep into your being those meds had to get to kill this virus off then it makes sense that it will take you a while to get more back to normal.

Usually people do and only pretty rarely do they have long lasting issues that are that intolerable that they effect their course of life.  Just give it some time.

Good luck.
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Avatar universal
Welcome to the forum.  I'm happy for you that you are undetectable (if that's what you mean by clean).  I'm sure someone will post for you soon but, in the meantime, you might try typing "long term effects" in the search box in the right hand column of this page and a long string of threads will come up that deal with this topic...something for you to read in the meantime.  My best to you.
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