Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

Liked by bt56, denisefinn

@elgosta

Ye 10 years on and still experience side effects and am certainly not giving it big cheers and hcv free

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Same here! Was just being sarcastic. Over 15 years clear, 37 years old, 4 kids & thank God still married to the same man for 18 yrs. My first injection was actually the night before our wedding. My youth was for sure taken away from me. I’m just glad to finally know that I’m not alone & not going crazy…like most doctors make me feel!!!

Liked by ldestella

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@foggymama23

Same here! Was just being sarcastic. Over 15 years clear, 37 years old, 4 kids & thank God still married to the same man for 18 yrs. My first injection was actually the night before our wedding. My youth was for sure taken away from me. I’m just glad to finally know that I’m not alone & not going crazy…like most doctors make me feel!!!

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If its a word I can use thats fantastic you've I spite of everything , the night before ur wedding ouch it must of been so hard , my first injection I remember I was in hospital under supervision , I thought I was ok said to doctor I feel fine the min I left hospital it kicked in and it was horrendous I had never felt so cold it lasted for 2 days so over the next 6 month I knew what to expect

Liked by jenglereckedbin

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@elgosta

Ye 10 years on and still experience side effects and am certainly not giving it big cheers and hcv free

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I feel like im dying slowly and losing every part of my mind daily…

Liked by growly

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@foggymama23

Same here! Was just being sarcastic. Over 15 years clear, 37 years old, 4 kids & thank God still married to the same man for 18 yrs. My first injection was actually the night before our wedding. My youth was for sure taken away from me. I’m just glad to finally know that I’m not alone & not going crazy…like most doctors make me feel!!!

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pls push these side effects on every doc that u see, then show them these posts, i will not quit until the big pharma pays for this…seriously!!!

Liked by growly

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@elgosta

The majority of people on here are post treatment in terms of years and still suffering but hay hcv free hip hip horay 😢

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@elgosta as am I. 15 years post treatment & suffering every single day with zero help from any doctor bc none will believe that all my symptoms are connected. Believe me, I could care less ab being HCV free.

Liked by jenglereckedbin

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Are there any other boards or forums that you all are a part of or is this the only one that discusses post interferon treatment? Just curious since this is the only place I’ve found. Thx!

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I acquired HCV in 1979 from a transfusion after a C-section. I was diagnosed (on my son’s 24th birthday) and treated in 2002 with Interferon and ribavirin, with sustained response. .later diagnosed with fibromyalgia. I have been researching HCV and the brain recently as my memory deteriorates. Apparently HCV can infect the brain directly; this may be why the hepatitis can recur after successful treatment and why you have to be retested for active virus periodically. Inflammatory brain responses in the brain are apparently common with HCV. I had a second child, who tests positive for HCV antibodies but not for active virus. From reading medical articles, I gather there is some possibility that he could have inflammatory reactions despite not having the actual virus, but these were serious medical articles and I could have misunderstood this.
By the way, I tried Lyrica for over a year. It helped with the pain but totally screwed up my brain. When I realized this, I stopped the Lyrica as well as several antidepressants, only to develop fairly severe flu-like symptoms, chest pain, GI issues. ER doctors, cardiologist, five doctors couldn’t tell me what was happening. Finally a mental health worker I met said “discontinuation Syndrome.” Googled it, of course….everybody in the
Mental health field recognized it immediately. Many of you seem to have worse situations than I do, I am sorry for to hear your lives have been so badly affected. I am equally tired of hearing that my problems aren’t real…. for years before HCV was recognized I had been going to my primary and asking why I was so tired, did I have Lyme disease. Since the tests for that are not reliable, he never had an answer. Finally I saw a Newsweek cover “Chronic fatigue? HCV”. There is a great deal that medicine does not know, but doctors are trained to act as if they know everything so as to inspire confidence. It is frustrating for all of us to have to survive before research finally proves that this isn’t in our heads. I remind myself that whatever Interferon did to me, at least I am not on a liver transplant list, for what it is worth.

Liked by jenglereckedbin

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Thank you for sharing your story and interesting research that will be a very helpful foundation for presenting my medical symptoms to the Hep C clinic nurse in February. My story is quite similar to yours where I contracted Hep C in 1988 following a blood transfusion during child birth which was not diagnosed until 2003. Following that I began the Itererferon / Rabivirin treatment after which I became very ill and subsequently had to take an early retirement due to fatigue and cognigitive problems. Like many many other people although I am grateful to be alive and able my life was destroyed losing my career income and my house not to mention the suffering of my family supporting me . For all these years making appointments to the doctors to find out what was wrong with my health never ever resolved the symptoms. It's only by research about the long term damage caused to peolpes health after Interferon etc that things started to make sense. The Neurological aspect of post Interferon at particularly interesting because in 2000 I had a benign brain tumour removed. Following extensive therapy and a special driving test I was able yo return to work and drive again. This left me with parcial temporal 'epilepsy ' which eversince I believed to be the cause of all my fatigue etc. My current Neurologist recently told me in his judgement my health issues are nothing to do with my non existing 'epilepsy' and after several MRI scans he referred me to a Hep C clinic ! 😉

Liked by foggymama23

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I was on the telapravir/interferon/ribaviron drug trial around 2009-2010 and cleared the virus in 6 months. I have been very sick ever since then. Diagnosed with fibromyalgia shortly after ending treatment, then rheumatoid arthritis and now sjogrens syndrom. Have been in chronic pain since then. My life has been in decline since then. I was shocked to see that there are others out there having similar issues.OMG. Has anybody talked to any doctors about this?

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@klk370

I deal with life by doing lots of meditation. I also use ice for pain. I was on a long acting pain medication, but new government regulations regarding pain meds made it so that i can no longer be on that. My life has gone from bad to worse without that medication. I am not giving up hope that I will improve, or get back to at least the level of functioning i was at while on heavier pain meds. I wish the pharmaceutical companies would admit to long term side effects post interferon. There are plenty of us out here suffering. I had genotype 3A. I wish i would have known that new treatments were on the horizon back in 2009 when I took the Pega interferon treatment for six months of hell. I do not have the virus detected in my blood anymore. I am barely able to leave the house anymore, however, and developed my symptoms of pain and fatigue shortly after finishing the treatment. I am and have been chronically ill for over 8 years. I am not getting better at this point, but have gotten worse. The long term side effects of post interferon syndrome have devastated my life. I do my best to remain hopeful, and grateful for whatever i can.
Best,
Krista

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I am experiencing the same thing

Liked by jenglereckedbin

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@jwbeenie

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?

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My fibromyalgia started shortly after ending treatment

Liked by jenglereckedbin

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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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How do I pm you

Liked by jenglereckedbin

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@jenglereckedbin

Hello are you in the USA ? I live in UK

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That's great News!! Well done as I'm in the UK I don't suppose I will be able to contribute 🤔 I'm hoping there will be something similar here too x

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@cynthsick

My fibromyalgia started shortly after ending treatment

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I hope you regain some strength some how x maybe there is a support group in your part if the world. How did you get diagnosed? You must of had a good Doctor. I have been going through the same old load of symptoms as are thousands of us never getting anywhere with medical support but then I am talking of the nhs…..maybe I should look into private health care ?

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@freehepc

How do I pm you

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hello, just hover the curser over my name!! I look forward to hearing from u!!! xo Lisa

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