Aa
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.
Melins
This discussion is related to Are there long-term neurotoxic effects from Ribavirin??-getting worried here.
HCV doesn't go into remission. Either the meds kill the virus and you reach SVR or you don't. Sorry for your longterm issues.
I just wanted to let people know that I took this powerful medications of pegasys and ribavirin. The treatment was suppose to be a 12 month treatment with a 50% cure rate, and my treatment lasted 6 month because I had complication with anemia during treatment but the end result was that the treatment was successful and the diease hep C went into remission. My current issues now are fibromyalgia, hypothyroidism, major depression, anxiety, chronic fatigue syndrome. I believe if anyone is suffering after treatment they should go see a Rheumatologist or primary care Doctor to rule out and get a diagnoses or a referral to a Specialist to any of the following symptoms of fatigue, trouble consideration, irritability, brain fog, joint pain, muscular pain, stiffness in joints or muscles, or any issues that started after treatment. Also, if anyone looks up on-line on side effects of ribravirin and pegasys they will find a list of potential long-term side effects of taking this medication the list is very long. DON'T GIVE UP AND KEEP ASKING QUESTIONS.
has anyone had problems with not being able to keep an erection since having the pegasys/ribavirin treatment?
Interferon and Riba affects everyone differently. I have no doubt that some people have long term, and possibly permanent, damage as a result of treatment. A friend of mine does have long term memory loss, fatigue and depression post-treatment. Another friend feels as if he's never had the disease.
I was warned by my doctor that I may feel better or, worse, after treatment, whether I cleared or not. I was also warned that my hepatitis may improve or worsen, even if the virus cleared. There are serious risks to this treatment. I hope for better treatment in both the humane and the medical senses. Until so, I think it's important that one understands ALL the risks before going for it. I think part of the suffering for these people is not understanding what's happening to them and not being validated by the medical and drug industries.
I was warned by my doctor that I may feel better or, worse, after treatment, whether I cleared or not. I was also warned that my hepatitis may improve or worsen, even if the virus cleared. There are serious risks to this treatment. I hope for better treatment in both the humane and the medical senses. Until so, I think it's important that one understands ALL the risks before going for it. I think part of the suffering for these people is not understanding what's happening to them and not being validated by the medical and drug industries.
Bobby...Hey thanks for the heads up on hsCRP reactive, I forgot about that...
been having tachycardia lately...started after exercise...2 months ago...so bad now I almost went into Er last night...well...now I'll know what test to ask for...my idiot GP thought I have vertigo...since when does vertigo cause tachycardia...sheesh.
ny girl
you may be on to something...been thinking that 4 days...like who gets this and their first question is that...oh duh. Not saying everyone is...but I think maybe our old OCD friends make have stuck their heads in here again. They are never particularly subtle are they.. Can't hep yerselves eh dudes? (pardon the pun)
mb
been having tachycardia lately...started after exercise...2 months ago...so bad now I almost went into Er last night...well...now I'll know what test to ask for...my idiot GP thought I have vertigo...since when does vertigo cause tachycardia...sheesh.
ny girl
you may be on to something...been thinking that 4 days...like who gets this and their first question is that...oh duh. Not saying everyone is...but I think maybe our old OCD friends make have stuck their heads in here again. They are never particularly subtle are they.. Can't hep yerselves eh dudes? (pardon the pun)
mb
I've got a lot of the same issues, but most of mine developed mcuh more severally a few months after treatment. Not sure why. My best guess is withdrawal from other treatment drugs may have triggered things. Getting off several helper drugs that are addictive has caused a fire storm it seems.
My other suggestion is you get checked by an endocrinologist.
you've already been to a neurologist. If he did his job I'm sure he checked you eyes, nerves and labs and ruled on encephalopathy. Long term use of drug can produce symptoms you are having, but so can coming off of them.
An endocrine dysfunction can also lead to what you are describing. Having glands that don't work can lead to every symptom you are describing.
Unfortunately there's a lot of overlap. For instance pancreas and parathyroid dysfunction can cause tremors, thyroid and pituitary can cause memory...and on it goes. Since HCV causes overall lowering of hormone secretion, since they have tied HCV to loss of function in each of the endocrine glands, the only way to really know where you stand is to have a competant endocrinologist do a complete work up.
This isn't entirely easy. Research shows for instance that half of HCV patients have low pituitary function, but it is very rare in general populace...get your endo to do a simple IGF-1 bllod test to screen you...get your thyroid tested, your parathyroid (calcium level,) your fasting insulin and glucose, and your IGF...just for starters...I'd do cortisol also. mb
My other suggestion is you get checked by an endocrinologist.
you've already been to a neurologist. If he did his job I'm sure he checked you eyes, nerves and labs and ruled on encephalopathy. Long term use of drug can produce symptoms you are having, but so can coming off of them.
An endocrine dysfunction can also lead to what you are describing. Having glands that don't work can lead to every symptom you are describing.
Unfortunately there's a lot of overlap. For instance pancreas and parathyroid dysfunction can cause tremors, thyroid and pituitary can cause memory...and on it goes. Since HCV causes overall lowering of hormone secretion, since they have tied HCV to loss of function in each of the endocrine glands, the only way to really know where you stand is to have a competant endocrinologist do a complete work up.
This isn't entirely easy. Research shows for instance that half of HCV patients have low pituitary function, but it is very rare in general populace...get your endo to do a simple IGF-1 bllod test to screen you...get your thyroid tested, your parathyroid (calcium level,) your fasting insulin and glucose, and your IGF...just for starters...I'd do cortisol also. mb
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