Long-term effects of Pegasys/Ribavirin

[melinsday]

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.

[jenny251]

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.

[Cheesegrater]

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...).

[TeaCea]

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  

[tonyh1929]

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.    

[ninezero8]

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....

[otterwatcher]

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