Aa
Aa
A
A
A
Close
Avatar universal

Long-term effects of Pegasys/Ribavirin

I am a 52 year-old, caucasian female.  I finished a year-long treatment of Pagasys and Ribavirin in 06/2008.  It was successful!  18 months later however, I'm feeling little change from when I was taking the drugs.  I'm having problems in many areas.  I have chronic fatigue, "brain fog", short-term memory loss, rare but severe memory loss (like a blackout, during which I've had conversations, driven, walked, eaten), lack of focus, difficulty with spacial issues, tremors, acute joint pain, clumsiness and more.  This has affected the quality of my life significantly.  Neither my hepatologist, primary care physician or psychiatrist have heard of the effects of this treatment continuing for this long and have offered no suggestions.  Please, what is my next step?
Melins


This discussion is related to Are there long-term neurotoxic effects from Ribavirin??-getting worried here.
49 Responses
Sort by: Helpful Oldest Newest
747988 tn?1396536878
how about the fatigue? is it any better?
Helpful - 0
4681532 tn?1357914201
It's a year & a half later, & i'm sitting here with my hands tingling, dealing with on again off again joint pain (sometimes a wrist, sometimes an ankle, sometimes all over) short lasting (anywhere from a split second to 30 seconds) stabbing pains like someone has stuck me with an icepick. In the last couple of months I have a new one...recurring pain where I did the injections.including Diastasis Recti. PCP told me 'you know, you are getting older". I was using pot for relief (I also did this during treatment at the "off the record" advice of my gastroenterologist), but I now have a job that does random drug tests (non medicinal marijuana state)
Helpful - 0
1491755 tn?1333201362
hmmm you sure did spark my curiosity here is what I found, I say that 99.9% b/c you take the number cured and divide it into the number of relapse and % wise very small.  But I do stand corrected please read this;

Sustained Virologic Response: Is This Equivalent to Cure of Chronic Hepatitis C?

(this is the conclusion the article cost $35 I bought it feel good about SVR(my own) but ya there seems to be a connection with immune supression and SVR ).

So what can be concluded presently regarding the significance of an SVR? Current data suggest that achieving an SVR almost always signals durable loss of virus and improvement of the associated liver disease, and hence indicates apparent cure. But this may not be universal for as yet unknown reasons. Conceivably, occult HCV infection may remain just that until stressed by an immunosuppressive event. What seems important, in addition to seeking reasons for the con- flicting data, is to define characteristics of persons likely to relapse or develop HCC, who would then warrant frequent virologic and biochemical screening after reaching an SVR in order to begin appropriate management early. For the rest, it seems appropriate to perform virologic and biochemical screening annually, as suggested by others,2 particularly if, at the time of reaching an SVR, there was histologic evidence of advanced fibrosis or cirrhosis.
LEONARD B. SEEFF, M.D.
The Hill Group Bethesda, MD
440 SEEFF
HEPATOLOGY, February 2013
Helpful - 0
1491755 tn?1333201362
OK I think I might have found what you're basing your post on.


Sustained virological response SVR is defined as undetectable HCV RNA in plasma 6 months after therapy has been discontinued. Relapse or re-emergence of viremia after SVR is rare. We report two patients that relapsed when immune suppressive therapy was given within a few weeks of achieving SVR. Patient 1 received prednisone for bronchitis and patient 2 relapsed soon after immune suppression was started post renal transplantation. These data suggest that the early phase of SVR might be associated with incomplete protective immunity. They suggest that sterilizing immunity with complete elimination of virus is unlikely. The cases also caution against the use of immune suppressive therapy in the immediate aftermath of SVR.

Thanks I had not seen this before.  I wonder if this is well known now and taken in account when dealing with simple ailments post treatment within X amount of time.  As they said "relapse" is very rare, so rare you can scour the internet and find little support that suggest SVR isn't 99.9% a sure thing.  I'm going to dig into this study and email the authors asking them a few questions.  
Helpful - 0
1491755 tn?1333201362
Please provide a study detailing people who have achieved SVR and "relapsed"  which is pretty much impossible because they could expose themselves to the virus so that's not a relapse.  And please provide the links that support your point, it would be a lot faster that me trying to figure out what you are basing this on.
Helpful - 0
253566 tn?1219679699
Good luck yourself!

As to the antidepressants - your body will know. That is how it worked for me at least. I told my Psych that I was done with them and he said OK and we started slowly halving (or whatever the plan was - actually forget now...) and at that point didnt have any issues coming off the Ads.

I was still on anti-anxiety meds (very low dose) which probably helped but I could use as I wanted so...

Again, best of luck and congrats on the win!
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C: Post Treatment Issues Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
7469840 tn?1409845836
San Diego, CA
475555 tn?1469304339
Woodhaven, NY
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.