Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

Liked by bt56

@jwbeenie

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!

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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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@ldestella

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

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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.

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@growly

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

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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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@ldestella

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

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I'm defiantly interested, Any info would be much appreciated.
Thank you.

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@ldestella

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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Any info would be so very much appreciated. Thank you so much.

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@colino

Thank you. The doctors say the main thing is to start getting better now. The cause of your depression is secondary to your getting better. It’s not secondary to me. Also, “ Oh, I don’t know,what you’re talking about, but that was so long ago. Can’t you just get over it.” No I can’t just get over it. Time doesn’t help. I always feel like I stopped treatment yesterday even though it’s been 20 years. I can eat, I don’t have flulike symptoms anymore and with medication I can sleep, but the bad thoughts are constant. The few people I mention it to say “Everyone has days like that”. No they don’t. Thoughts of suicide plays like a loop. Over and over. Sometimes for days. I look at at some stuff on line and the questions are like “ How many times have you thought of suicide in the past week, once, twice? Or more. How about 1,000? It’s ongoing, it never stops. The medication allows me to function, but that’s about it.
Hear “Just be glad your cured”. No. I’m not. Interferon is the gift that keeps giving. Anyway, I don’t talk about it anymore, to anyone.

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Not 15 minutes in a day that it doesn't cross my mind. But I can't. I have kids, adults but still they're mine. My dad checked out early on me when I was 11. I won't do the same. But I definitely know your pain. Someone has to be held accountable for this.
growly.

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I hope this will help in some way. Maybe if we started a community board to post things known, that will help with finding medical and legal help. I read that(pegalated) Interferon and. (Rebitrol) Ribivarin were taken off the market in 2016. The reason wasn't from the side effects they said. Also sherring plough was under investigation by the U.S. Justice dept . For possible Marketing violations concerning Interferon/Ribivarin. Apparently supposedly giving kickbacks to doctors who prescribed this stuff, in the form of family vacations etc. I'll do some more diggin and see if I can't find more info. But maybe if we all put what we know on a common board. Ya never know might just get somewhere. Also it would be a way to separate the fact from fiction. I'm willing to eat a little crow if it means we get somewhere.
growly.

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Interferon, or ribavirin discussion. I think I was the first one to put this on the board for discussion. These drugs have affected so many of us in so many ways. These drugs are poison. I suggest complaining to the FDA. The difficulty of living with the aftermath is devastating.

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@growly

Any info would be so very much appreciated. Thank you so much.

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Hi @growly, you'll notice that I removed your personal email address from your posts. We recommend not sharing personal contact information in a public online forum. We don't want you to get unwanted spam as a result. Instead we recommend using the private message function. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.

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@johnwhitfield

Interferon, or ribavirin discussion. I think I was the first one to put this on the board for discussion. These drugs have affected so many of us in so many ways. These drugs are poison. I suggest complaining to the FDA. The difficulty of living with the aftermath is devastating.

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Something I should have done years ago and will do now. The fact that so many of us now suffer from fibromyalgia should be looked at. I still would like to know why I have these occurrences of high fever, rigours and bone pain that mimic what I experienced hours after each interferon injection. It comes from nowhere and has happened for 12 years. I finished treatment 15 years ago.

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@txnurse66

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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My groin and underarms are fried Is there no way to be compensated for
being their guinea pig

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@txnurse66

Something I should have done years ago and will do now. The fact that so many of us now suffer from fibromyalgia should be looked at. I still would like to know why I have these occurrences of high fever, rigours and bone pain that mimic what I experienced hours after each interferon injection. It comes from nowhere and has happened for 12 years. I finished treatment 15 years ago.

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I have the same problem. Sometimes I have to go to bed and feel like I have the flu

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@ethanmcconkey

Hi @growly, you'll notice that I removed your personal email address from your posts. We recommend not sharing personal contact information in a public online forum. We don't want you to get unwanted spam as a result. Instead we recommend using the private message function. However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.

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Thank you for pointing that out to me. I defiantly appreciate the interaction with all the other sufferers of Post Interferon Syndrome. Thank you again.

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I was one of the first people to ever undergo treatment for hep c. I was given an incredible amount of interferon alpha two A although I have been told it must have been alpha 2 b, but I no longer have any paperwork so I don’t know. It was in 1995 and was an experimental treatment. I saw a specialist who wouldn’t allow me to tell him about the side effects I was having except for my top three. I would try to show him my list and notes about all the awful things I was going through but he was very firm. If you don’t like it you are welcome to quit but you will die. During that year I lost over 50lbs and was in so much pain and very weak. He told me my pain was fibromyalgia that would definitely go away when I was finished with treatment. He sent me to a rheumatologist for that who was one of the leading rheumatologists in the country when it comes to fibromyalgia. He told me that there was no hope that fibromyalgia would go away. He said there is no cure but doctors due their best to help control symptoms. All these years later I am not better and in fact the symptoms only get worse the older I get. I am looking for help because I have so many crazy symptoms that doctors don’t know what to do so I get shuffled from doctor to doctor with no real relief. My sister-in-law found this site and sent it to me with This is you! So now I am here to ask for help. Is there a doctor or a clinic that specializes in this syndrome? I would go anywhere to finally find some help
Barb

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@jwbeenie

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!

Jump to this post

I also was treated in 1995 and have been sick ever since. I was able to work up until 3 years ago and am now on disability

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