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.
Thought you might like to know that I had interferon more or less foisted on me in 2005. Unlike you, I didnt have any signs of hepatitis at all but was (accidentally) discovered to be HCV+. I have never had symptoms of hepatitis, have a good healthy liver in fact. Even so, I have exactly the symptoms you describe, plus a few more.
I thought you might like a second opinion that it was the interferon did this, not your liver. Considering the interferon treatment was known to be ineffective there is no way the balance of risks excuses the way it was foisted on everyone. I was told I would have liver cancer within 2 years if I didnt consent. An absolute load of cobblers in my case.
Anyway best of luck. Let someone else do the cooking.
Still searching for answers 13 years post treatment. Began first interferon/Ribavirin 1999, there was Intron A. Then pegylated with Ribavirin for one full year ending 2006. So 7 years on and off. I have been diagnosed with fibromyalgia, but approved meds don’t help the pain. I could literally stay in bed all day everyday. 9 months after end of treatment I began having these bizarre episodes of acute onset high fever, bone breaking pain, rigours, and vice gripping headache. All very similar to reaction after interferon injection. Been to many drs, they have no answer. Happened again last night (symptoms hit like a train and gone in 12 hours). Never know when it’s coming, but 13 years post treatment? Anyone else have similar or answers ? Thanks
I ended treatment 2006 and after continuous all over joint and body pain, I went to a rheumatologist. My primary care thought I was drug seeking. Rheumo disgnosed with fibromyalgia and he was first one to mention Post Interferon Syndrome. Why didn’t our prescribing drs tell us what we were getting into ? I had to read about “chemo brain” in the newspaper!!
Colin, I am miserable too. The suffering is unbearable. I took peg interferon from 2002-2003 for the 48 weeks. I have major depression and anxiety that has dominated my life for 17 years. I would take the virus back any day instead of this awful life I endure. I cry everytime I hear someone's story because doctors, psychiatrists, specialists, friends, family etc. tend to think it's all in my head. Then I see my own thoughts in other people's words. How could they have allowed such a toxic drug to be given to any living being? I wouldn't wish this medicine on a serial killer.
Agreed. Nice to see some activity. For those of us with severe reactions time doesn’t heal all wounds, if anything it gets worse. So I just don’t talk about it. When I get a really bad couple of days in a row I try to avoid people as much as possible. Sometimes my wife picks up on it and asks what’s going on. I can’t explain it, my brain just goes bad, or worse than usual, everything is black.She tries to help, “look hw much you have to grateful. She’s right, but it doesn’t work that way. My son is handicapped, he doesn’t talk, ask questions or judge. We spend a lot of time walking around and I can relax. That helps a little.
I haven't been on here in quit awhile. I have to say, It pains me to see all the new activity. On the other hand, it gives me great encouragment that so many are coming forward. We've all been dupped, to put it mildly. Guinea pigs to the pharmaceutical companies. It truly breaks my heart when I read all the long term side effect sufferers tell their story. We're all the same. And like many I've read. If I'd have known then,what I know now. I never would have taken the Interferon or the Rebitrol.I was on the alfa2b treatment 6 mos. It blew my candle out. I just exist now. Nothing more. Hopefully to someone, somehow, this site will be of use to them. Thanks for listening, "Reading" I appreciate ya. growly
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!
That's the same thing I've ran into. None of my Dr's even want to talk about interferon,or ribivarin. Or post interferon syndrome The minute I'd bring it up, they just ignore it,and move on. I don't even bring it up anymore,vary rarely. My eyesight also went. Post treatment. One day I could read just fine,the next I needed glass's. Thank you for sharing, I appreciate that I'm not the only one having trouble finding a doctor that will listen. growly.
Hi!!! please review this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3394469/ there are many more articles saying this exact same thing. we are not nuts. i have tried several lawyers but no one will touch it!!! PLEASE EVERYONE...THERE IS A FDA WEBSITE WHERE U CAN TURN THESE DRUGS IN. I DID MONDAY. THIS WOULD BE ONE WAY TO GET NOTICED. Everyday is a battle for me to even get thru a day. my immune system is GONE...i have CVID from these treatments. I HAVE TO HAVE INFUSIONS THE REST OF MY LIFE. I am just starting my 35th antibiotics in 2 yrs. I have Sjogren's syndrome (autoimmune), bad stomach probs, massive pain in my joints, and the fatigue is overwhelming. I am a RN and also have a master's public health. can't work or even function hardly. i went to my grocery store that i go to at least 3x week and got lost inside, got more confused than usual. we need help so so bad
I went to the FDA website. There are A lot of catagories to choose from. Tho I defiantly appreciate the info you provided. Any chance you could be a little more specific. Again thank you so much for the heads up.
I haven't been on here in quit awhile. I have to say, It pains me to see all the new activity. On the other hand, it gives me great encouragment that so many are coming forward. We've all been dupped, to put it mildly. Guinea pigs to the pharmaceutical companies. It truly breaks my heart when I read all the long term side effect sufferers tell their story. We're all the same. And like many I've read. If I'd have known then,what I know now. I never would have taken the Interferon or the Rebitrol.I was on the alfa2b treatment 6 mos. It blew my candle out. I just exist now. Nothing more. Hopefully to someone, somehow, this site will be of use to them. Thanks for listening, "Reading" I appreciate ya. growly
Hey growly ! Wish I had found you guys years ago, really felt alone and drs treat me like I’m crazy “the depressed woman syndrome.” It’s insulting. I refuse to take antidepressants, they do make me feel crazy ! I’m just afraid of what’s next. The fibromyalgia and chemo brain are about all I can handle and attempt to function. Now that I know I’m not alone in this battle, am considering a legal consultation . What the hell, right ?? This feed alone screams Class Action. For now, let’s all keep on keepin on and be a source of support ✌️❤️
morning, i just got off of the phone with Merck...who bought out Schering-Plough whom MADE THE INTERFERON N RIBAVIRON. I reported the drug to them n when n where. also told them i am seeking a lawyer...they asked me questions for 30 min. Anyone interested in going this route pls PM me. i also turned this in to FDA
Hi, there are none here either...im making noise right now...we will be noticed...if anyone wants to connect via ph or email pls let me know. i have found peer reviewed journal articles n other things...u need to start some noise there!!! together, we can do this!!!! i would be happy to share with u!! xo
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Thought you might like to know that I had interferon more or less foisted on me in 2005. Unlike you, I didnt have any signs of hepatitis at all but was (accidentally) discovered to be HCV+. I have never had symptoms of hepatitis, have a good healthy liver in fact. Even so, I have exactly the symptoms you describe, plus a few more.
I thought you might like a second opinion that it was the interferon did this, not your liver. Considering the interferon treatment was known to be ineffective there is no way the balance of risks excuses the way it was foisted on everyone. I was told I would have liver cancer within 2 years if I didnt consent. An absolute load of cobblers in my case.
Anyway best of luck. Let someone else do the cooking.
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1 ReactionStill searching for answers 13 years post treatment. Began first interferon/Ribavirin 1999, there was Intron A. Then pegylated with Ribavirin for one full year ending 2006. So 7 years on and off. I have been diagnosed with fibromyalgia, but approved meds don’t help the pain. I could literally stay in bed all day everyday. 9 months after end of treatment I began having these bizarre episodes of acute onset high fever, bone breaking pain, rigours, and vice gripping headache. All very similar to reaction after interferon injection. Been to many drs, they have no answer. Happened again last night (symptoms hit like a train and gone in 12 hours). Never know when it’s coming, but 13 years post treatment? Anyone else have similar or answers ? Thanks
I ended treatment 2006 and after continuous all over joint and body pain, I went to a rheumatologist. My primary care thought I was drug seeking. Rheumo disgnosed with fibromyalgia and he was first one to mention Post Interferon Syndrome. Why didn’t our prescribing drs tell us what we were getting into ? I had to read about “chemo brain” in the newspaper!!
Agreed. Nice to see some activity. For those of us with severe reactions time doesn’t heal all wounds, if anything it gets worse. So I just don’t talk about it. When I get a really bad couple of days in a row I try to avoid people as much as possible. Sometimes my wife picks up on it and asks what’s going on. I can’t explain it, my brain just goes bad, or worse than usual, everything is black.She tries to help, “look hw much you have to grateful. She’s right, but it doesn’t work that way. My son is handicapped, he doesn’t talk, ask questions or judge. We spend a lot of time walking around and I can relax. That helps a little.
I haven't been on here in quit awhile. I have to say, It pains me to see all the new activity. On the other hand, it gives me great encouragment that so many are coming forward. We've all been dupped, to put it mildly. Guinea pigs to the pharmaceutical companies. It truly breaks my heart when I read all the long term side effect sufferers tell their story. We're all the same. And like many I've read. If I'd have known then,what I know now. I never would have taken the Interferon or the Rebitrol.I was on the alfa2b treatment 6 mos. It blew my candle out. I just exist now. Nothing more. Hopefully to someone, somehow, this site will be of use to them. Thanks for listening, "Reading" I appreciate ya. growly
That's the same thing I've ran into. None of my Dr's even want to talk about interferon,or ribivarin. Or post interferon syndrome The minute I'd bring it up, they just ignore it,and move on. I don't even bring it up anymore,vary rarely. My eyesight also went. Post treatment. One day I could read just fine,the next I needed glass's. Thank you for sharing, I appreciate that I'm not the only one having trouble finding a doctor that will listen. growly.
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1 ReactionI went to the FDA website. There are A lot of catagories to choose from. Tho I defiantly appreciate the info you provided. Any chance you could be a little more specific. Again thank you so much for the heads up.
Hey growly ! Wish I had found you guys years ago, really felt alone and drs treat me like I’m crazy “the depressed woman syndrome.” It’s insulting. I refuse to take antidepressants, they do make me feel crazy ! I’m just afraid of what’s next. The fibromyalgia and chemo brain are about all I can handle and attempt to function. Now that I know I’m not alone in this battle, am considering a legal consultation . What the hell, right ?? This feed alone screams Class Action. For now, let’s all keep on keepin on and be a source of support ✌️❤️
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1 ReactionI'm defiantly interested, Any info would be much appreciated.
Thank you.
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1 ReactionAny info would be so very much appreciated. Thank you so much.