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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
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747988 tn?1396536878
they are trying to extract 260 different compounds from cannabis and sell it back to us in drug form! complete madness.
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253566 tn?1219679699
I was reading about sativex - WoW - got some controversy there!!!

Licensing for one and only one Pharma to distribute pure medical marijhuana! Seems like they are taking very controlled growth plants - of course - extracting the pure plant - putting it in spray form and charging a huge amount of money £500 a month as *after all the research - NHS won't be covering this "Legal" Pot!

MS patients are saying it is very effective but cannot afford it! Oh, btw, it does get you stoned!
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Avatar universal
I understand how that could make things more difficult. I don't have a helpful suggestion so I will wish the best and lurk around.
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747988 tn?1396536878
medical marijhuana  is  illegal here in the uk-there is sativex but it is only approved for use wth M.S. patients at the moment.
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Avatar universal
CBD tinctures, not THC, I have heard really help in this kind of situation and are legal or at least I understand they have recently become legal. Probably worth checking into if  you are being set upon by drug testing in the workplace. I don't know much.....but I do know very little. Good luck to you.
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Avatar universal
If I was to make a guess it would be that the pot greatly alleviated some of the bad side effects of treatment; especially nausea. I have heard from others that pot helps the side effects of just about any kind of treatment not just HCV. Good for you for trying.
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747988 tn?1396536878
how about the fatigue? is it any better?
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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)
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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
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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.  
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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.
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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!
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Avatar universal
It's bloody awful stuff this treatment!
I finished (successfully) a week before Christmas 2012. It really was the most physically, emotionally and mentally challenging time of my life, but at the same time I also learnt so much about myself and how strong I could be.

Hang in there!

9 months on I'm still not feeling 100%, but I am feeling a whole lot better than I was during the treatment. My energy levels are very low but I'm trying to get back to my pre treatment fitness and maintain a really healthy diet. I'm still taking mild antidepressants which I started during my treatment, I want to come off them but I'm not interested in going through the pain of the withdrawals at the moment.

Good luck!
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Avatar universal
James, google- HCV SVR relapse after immunosuppression... then- Study HCV particles detected in SVR/ circulating blood, plasma, lymph. Your point blank 'this is the way it is' advise seems extremely dangerous to those who may be susceptible to relapse.
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Avatar universal
You're not the only one , I have been having ED issues , energy issues and simply haven't felt right since I finished the treatment in 2011 . I am suspicious of having developed a heart condition , though I haven't had it confirmed I have the harbingers including ED . I also have shortness of breath and fatigue to go along with it which is unexpected as I have exercised , ran , swam etc most of my life , I'm also a vegetarian . I'm going to get every test I can and try and figure it out , but I am more than a little suspicious of the treatment . While I am currently 63 I have always kept fit and the onset timing is curious .
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747988 tn?1396536878
good on you-please let me know how you get on.
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Avatar universal
I have JUST started with my treatment of the Pegasys Interferon, Ribo Pack and Incivek.

I am NOT joking when I tell you that by the next day, no one could understand me, i was in a total fog, i was falling all over the place, walking into walls and had NO short term memory..

My Dr. took me off of it 3 days later and I see him tommorrow.

So--YOU ARE NOT ALONE!! THIS IS AFTER ONE TREATMENT!!!!
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4681532 tn?1357914201
I copied your post to take to my Dr, It describes what I am going through perfectly. I completed 6 mo regimen 3 months ago. I have also developed sciatica since treatment.
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Avatar universal
I began treatment,double dose, 8 weeks ago. My Hep C wea not detected in my blood and my viral load was 0 on my 6th week. I absolutely hate being on these meds! I have brain fog as well and am awful tired, Lately, I have been experiencing stomach pain and extreme lower back pain. I don't understand why i still have to take the meds if the virus is gone. I don't my doc I was having joint pain and stomach pain and he said, Oh the interferon causes flu like symptoms, you'll be fine. Then he left the room and told me to come back in 2 months. I felt good in the beginning, but after weeks went by starting feeling awful going into 3rd month of therapy.
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Avatar universal
You describe what I went through after my first therapy, I was in interferon 3x a week with riba, I NEVER got back to normal.  I still have the virus.
That was back in 1999-2000 or so. I have been on several therapies since, no success. I am starting to get back to normal now.  
What worked for me.....
4000 IU/vitamin D a day for about a month, then 1000 IU/day. Helped a lot.
But recently,   1000 mcg (micrograms) Vitamin B12 a day.

B12 is essential for proper brain and nerve function.  I do not know how or why doctors have not figured this out yet, Vitamin B12 is stored in the liver, and proper liver function is essential for proper vitamin D metabolism.  
I suspect treatment may deplete the store of B12 and it may take some high strength supplements to restore. I dunno but it worked for me. Maybe I am one of those who have problem absorbing it from diet.

You can WIKI "vitamin B12"  and see for yourself.  It describes many of my symptoms (clumsiness, memory, concentration, reduced mental capacity - math, reading...).
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Avatar universal
I have Chronic Hep C I have been on Treatment 4 or 5 times since 1997, the last time was in 2007, It did not cure me but it did save my life, I have lived to see my 9 Grand kids born, the oldest is 15 now and youngest 5. I have had problems after the meds but not like before. Now I have started the triple med treatment in the hopes of keeping my stage 3 fibrosis from going to 4. I was diagnosed in 1995 at the University of Washington after other Dr.s telling me for 5 years I had Lupus. I will take the years with my kids & grand kids if I can and do the treatment one more time. I think sometimes the other after effects are caused by other health problems not just the meds or the Hep. I blamed every pain and problem on the Hep C and found out I had other things too like other people, like Gall Bladder  & Fibramialgia   ect.ect. but I am still here and making the best out of what I have. Hope all do well  
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Avatar universal
Its my first time posting on any blog.  I got here because I googled side effects from interferon and ribivirin because I am having very similar side effects to melinsday.  I am a 52 year old male and I was on both for 11 months and was cured of hep c.  No virus for 4 years now.  That "brain fog", memory loss, spacial problems, dyslexia and faulty word formation are all symptoms that I have experienced that just don't seem to go away.  I was convinced it was related to my treatment as it came up during my treatment and slowly got worse after for a few months.  I never had any of these before interferon/ribivin.  My liver doc has no knowlege of these side effects from the treatment.  I have begun to think that he might be just covering his butt in case there might be some liability there.   I am relieved to know that I am not alone in this.  Thank you all for posting on this.    
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2102223 tn?1389369486
I just explained your situation to my wife and she said that it may be very possible that you have fibromyalgia. She got it years ago after having mono and apparently it is common after you have had an illness. You may research that as it may be a good suggestion. There is a lot of research on it and some medications although some doctors claim that it does not exist. We have researched it extensively and I am convinced that it exists and the symptoms are exactly as you have explained and could be as a result of the treatment. Something to consider....
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747988 tn?1396536878
hi-Im know where you're at - I've finally been diagnosed with Post Interferon Syndrome-it's like M.E. and I have also developed fibromyalgia-I did 6months treatment and successfully completed it 6 years ago this week.My problems started 3 months post treatment,my balance went first then extreme chronic fatigue then pain all over then food chemical and temperature intolerances,can't sleep.numb hands and feet,tingling stabbing or burning sensation in my skin,cognitive probs-number and word dyslexia,short term memory,irritable bowel,can't sit up for long.I'd suggest you ask to see a neurologist for starters and tell your consultant Post Interferon Syndrome does exist and it looks like M.E.
Wishing you luck with an early diagnosis so you can learn to manage your symptoms and make life more bearable.
Not everybody gets these side effects but a significant number do-have a look at the hep c trust uk's post treatment survey xxx
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