Post Interferon Syndrome

Lisa,
I do my best to keep my spirits up, even though i am in a very similar situation. I have a genuis IQ, which i never usually say, but saying it now because i can barely think straight half the time. I have terrible brain fog and memory problems. I was diagnosed with chronic fatigue syndrome and fibromyalgia, but also told these symptoms are a result of the interferon. Gastrointestinal problems and eyesight problems are also related to post interferon. I have been researching for years and would give anything to have not taken interferon. We are not alone. People all over the world are suffering similar long term side effects.
I cant undo what has already happened. All i can do is manage my symptoms as best i can and be grateful things are not even worse. No, it is not fair. Yes, there should be a lawsuit we could join. YES, they should be trying to figure out treatments to help those of us suffering years after treatment. Know that you are not alone. Ill keep you in my thoughts.
Krista

Thank u so much. I too, can't remember anything anymore. If given a choice, I would def not of taken the interferon. It didn't even clear the virus. I was one of the first to get salvaldi feb 2014 and took hcv away in a month...thank God. Pls keep in touch. OH, did u say a doctor told u these symptoms ARE from interferon?
Lisa

Hello, may I pls ask what u mean by how can one person can suffer all of these? I have many more things i haven't included lol pls elaborate!
Thanks, Lisa

I believe it is from treatment. There are too many cases of people with similar symptoms that have lasted a long time after treatment has been finished. I have been doing research on others out here. There is no way that I'm the only one that still has lingering effects 8yrs later. Sure enough, there are several of us!

I went thru treatment with intron A in 95 and then again with ribavirin and peg interferon in 2010. I'm SVR now and clear but this year is the first year I've felt some (but not much) improvement of my brain fog, malaise, bone aches, joint aches, and everything else. I was tested for everything under the sun and was finally diagnosed with fibromyalgia and myofacial pain syndrome. I spoke with my gastroenterologist doc and my family doc about long term side effects. They said there was no evidence of any documented. I showed my gastro doc forum after forum of people who had my symptoms and said I'm not going crazy and how do I get someone to study this? I still dont feel like i did prior to treatment and have widespread pain. I often wonder if my symptoms are from fibromyalgia or from the interferon? There are so many hep forums where 50% of the people complain of long term problems that are all similar. Oh ya.. my eyesight is also shot now too. Happened rapidly the first 3 years after treatment. Just sayin. I hope we make enough noise to make a difference and get someone to HEAR us. Thanks!

I also want to add that its ironic that a large amount of people post interferon all seem to be getting a Fibro diagnosis. Isn't that odd?

I found some letters i thought i lost and have tried to let go of my resentments.1-05-2010 was the beginning of my journey.
First time symtoms started. The only thing wrong was ifatigued and ankles swelling. My doctor found that my good cholestorol was bad. Bad cholestoral good.
Couldnt believe. 4-10-10 different dr different tests. Right groin was hurting.
Positive hep c. Genotype 1b.
6-30-2010 started treatment interferon and riba. After 8 weeks negative viral load. Responding .
40 weeks later with pegysus. Treatment stopped. Hepc free. Grateful. Destroyed i am!

Hi! I'm 3 years post interferon Alpha tx, 5 wk induction and 48 wks 3x per wk shots. I'm thankful to haver survived stage 3 metastatic melanoma but I just can't seem to shake the side effects. I though it was all in my head until I found this forum!! I still have the fatigue, body aches, depression, anxiety, brain fog, plus I've developed migraines! My doctors don't really hear me. How do I make them understand that it's not in my head, that my body still hurts, honestly I feel like I've been poisoned and just just can't flush it out!!

I've treated 2x with interferon and ribavirin Both treatments worked for 3 months Then back with a vengance.

I find it absolutely crazy that NONE of my doctors know anything about this or there hasn’t been enough studies done on it. 18 year’s ago I was involved in a study for Hep C drugs. 18 years ago I was 20 years old & had the liver of a 65 year old alcoholic so this study was a miracle for me to find & then be included in. I did so many different medications over the course of 2 years, I can’t even tell you what all I took. What I can tell you is that, 18 yrs later I get lost driving to my mothers house or taking my kids somewhere we’ve been multiple times. I can’t remember much & forget a lot more than I should, on a daily basis. I’ve been a stay at home mom for 14 yrs, which was an easy way to “hide” everything...plus “mommy brain” has always been a huge excuse. Then I was given Adderall & I did so good, it was a different world, but only for about 3 years. Now my dr won’t increase my dose & I’m stuck “all over the place.” Besides the fog & memory issues, math has become increasingly hard. My body aches, my joints hurt, my hair has turned 98% grey & I can’t lose weight to save my life! I feel so much older than 37. I wish there was more information on the long term effects of interferon on your brain/ body. I am convinced it’s what has destroyed me. I’ve cleared the virus for over 15 yrs now but the way I feel on a daily basis has me questioning if it was worth it.