has any one had long term side effects from Pegasys?

Question

I am looking for folks who have severe joint and mucle pain after treatment for Hepatitis c. ..the drug Pegasys and
Riboviran. All answeres will be helpful.

Answer 1

How long have you been off the treatment? They say it takes 6 months to get the drugs out of our systems, but I believe it's more like a year or two. I did the interferon & ribavirin treatment (non-pegylated, before that came out). I had joint pain before the treatment, but while on treatment it eased. After stopping treatment, it seemed to gradually get worse. I wondered if it was a long term side effect from treatment. Finally, 5 years after tx ,I went to a rhuematologist. At first, they couldn't diagnose me with anything because my blood tests only showed mild elevations. Things kept getting worse gradually, and I knew something was up. I went back a year later, and the PA at the rhuemy's office said she felt it was rheumatoid arthritis. I asked the doctor about the relationship between RA and treatment. The theory is that they think RA may be caused by a virus. The doctor thinks the RA (which they now think I have spondylar arthritis rather than RA, but same type of autoimmune disease, same drugs to treat it) was caused by the hepatitis C, not the treatment for it. If you think about it, the damage from hepatitis C is a result of our own body's attempt to fight off the virus, the luekocytes that attack the virus are what actually causes the fibrosis of the liver. I'm now on a DMARD (disease modifying anti-rhuematic drug) and an antiinflammatory which have helped me return to 99% normal painfree. Best wishes to you.

Answer 2

Pegasys Side Effects

Answer 3

there are many folks out there who have this issue...there was even a lawsuit at one point, but since not enough entered for complaints, it was dropped.

now, let me explain a bit about hcv and its treatment:

hcv alone causes this issue with joint pain and treatment in some who did not experience this issue prior to treatment ended up with it, whereas those who had the pain before ended up without it.

they are still not clear as to why this happens, however, one theory is that the medication for hcv brings out all the demons in their little hiding places (hcv yes, infects the liver as your aware, but it also affects other organs and tissues). these hiding places are targets for treatment just like everything else attatched.

the interferon causes the virus to come out of it's hiding places do to the "boost" of immunity and the antiviral ribavirin helps knock the virus on it's butt. sometimes what happens is that the medications also dry you out. if you did not drink enough water on treatment, you are left with after effects. anotherwords, you probably had pain in joints prior to treatment and just weren't aware of it and the medication exabborated the issue....(sometimes you have to make a mess to clean a mess).

OR-
you had an underlying issue not relative to the hcv and the medication aggrivated it-which sounds more like it. have you been tested for arthritis of any kind since treatment?

OR-
the medication affected the CNS- but again the virus does pass the blood brain barrier causing all sorts of CNS issues.

so in reality, we really can't blame the interferon or the ribavirin because the nature of hcv is that many do have actual symptoms prior to treatment, but they just never noticed them.

i had many symptoms starting at age 8. by the time i did treatment i was fortunate enough to actually feel better on treatment (although i did have psychosis third to last month).

my firbomyalgia hardly ever shows its face since treatment. (under stress is another story) but it is nothing like it was prior to treatment.

i wish i could explain the nature of hcv better, as well as how the medications work. but in all honesty, it wasn't just the medication-it was the virus as well.

good luck
ps. drink water if your still in recovery phase!