I for one developed an autoimmune disease - the interferon not only killed off the virus BUT it thought my thyroid was bad and killed that too. That is my biggest problem developed so far. I will be on medications *synthetic thyroid replacement* for the rest of my life.
Some people can continue to experience the side effects of the meds for the rest of their lives. the lethargy etc. I am sure some will talk more from their experience but as for me...the thyroid and having to take meds for the rest of my life...that is my biggy.
Still I find it worth it to kill this disease.
I've heard testimonies from others that some sx, like the mental fog, remains but that over time they do clear up.
I had several pre-existing autoimmune related skin conditions (psoriasis, seb dermattis, rosacea) flair during treatment and continue to persist 14 weeks post treatment. Prior to treatment, these conditions were a minor nuisance occuring at most 3-4 times a year. During treatment, they were a constant source of discomfort and remain so. Some other members -- Double Dose for one -- have reported other persistent autoimmune lupus-like symptons post treatment. During treatment, my Nurse Practioner mentioned that interferon treatment sometimes results in lingering kidney issues. I was never directly told about any of this either prior to treatment, although thyroid issues are well known. What I was warned about was the potential effect of ribavirin on my heart since I had somewhat of a cardiac history. In the end, you really have to balance the risks of treatment versus the rewards of treatment. You may here that lingering post treatment symptons only occur in a minority of those treated. Since there are no studies I know of that have accurately tracked this subject, that information must be anecdotal. Unfortunately, after SVR, many doctors close the book and move on to the next patient. Anyone here who SVRd ever get a call from their doctor two years later who asked how they were doing?
I'm still experiencing "mental fog" 14 weeks post treatment along with some other cognitive issues such as short-term memory loss and sometimes the inability to recall simple words or numbers. Today, for example, I forgot my cell phone number, which was unnerving. Probably won't panic, however, until I forgot my name :) My doctor calls this "interferon hangover" and says it will go away eventually. I am patiently waiting.
Sorry to hijack
Does anyone know the SVR % rates now that I am undetectable 5 weeks post-tx. Thank you
Hello to everyone here. Im one of a rare subgroup of people with HCV whose peripheral nerves and joints are effected long term. Also an oldtimer here.
Many of us have a related immune condition called cryoglobulinemia which causes neuropathy in a few and kidney damage in even fewer. Since interferon usually wipes out the cryo anyway, some docs don't screen for it. In my case it got dramatically worse but I was stubborn and endured for 96 weeks of combo therapy to save my liver. I was treated sucessfully with Rituxan for the cryo. The combo therapy worked and I'm SVR.
I have this permanent nerve damage (mostly legs and feet) and can't work full time. I can still do alot of the things I enjoy, though. I've had to learn to take it easy. Even though it was hard, I'm glad I did it. Dave