Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

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@sueleerock

My son broke his leg, so I've been very busy -- no fun when I myself do not feel well, and this would not have happened if he had not been drunk. Here is one site:

http://www.medhelp.org/posts/Hepatitus-C/Long-term-side-effects-of-interferon

I have a print out from 2011, no longer have a computer.

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Thanks. The site is no longer there. FYI I broke my leg because I was drunk when I was a kid. I turned out ok.

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@colino

There aren’t many people posting here. Maybe they think only a few people suffer like this? Maybe they’re right? Maybe only a few of us do suffer like this. Maybe no one monitors the site?

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About 10yrs ago, I read an abstract of a study done of a few thousand patients who had gone through long-term treatment with Interferon. In it, they reported that as many as 40% of these patients had a "syndrome" exactly like what we have. I was astounded! For many years, I thought I was the only one... or that it was either several conditions I had developed over time, or something entirely unrelated to my 2yrs of Ifn. I'll never forget how I felt after reading that article. Not only did I immediately feel that I was not alone, but I had an overwhelming feeling of, I guess, vindication. Now, after getting progressively worse over all these years, I just feel hopeless. But, I can absolutely attest to the fact that there are not only "thousands" of people like us... but more likely tens or even hundreds of thousands of people like us out there!

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@bbsheffield

About 10yrs ago, I read an abstract of a study done of a few thousand patients who had gone through long-term treatment with Interferon. In it, they reported that as many as 40% of these patients had a "syndrome" exactly like what we have. I was astounded! For many years, I thought I was the only one... or that it was either several conditions I had developed over time, or something entirely unrelated to my 2yrs of Ifn. I'll never forget how I felt after reading that article. Not only did I immediately feel that I was not alone, but I had an overwhelming feeling of, I guess, vindication. Now, after getting progressively worse over all these years, I just feel hopeless. But, I can absolutely attest to the fact that there are not only "thousands" of people like us... but more likely tens or even hundreds of thousands of people like us out there!

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Thanks. I read about depression and “my bouts with mental troubles”. These stories always, always, always end with “and then I got better”. Or “this to shall pass”. Well, that doesn’t do me any good. Like you, it gets worse everyday. For over 20 years. So now I know someone who’s ending is like mine. Not good. I hear, “at least you’re cured”. Fuck that. I got cured from a disease that had no symptoms and now I’m screwed. For a very long time. Every day is struggle. I’m worn out and there’s no end in sight.

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@acer16

Thanks. The site is no longer there. FYI I broke my leg because I was drunk when I was a kid. I turned out ok.

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Sorry about that. I have moved once a year lately, no longer have access to a computer, but i believe the site had the words hepatitis c in the title, can't remember. Thanks for letting me know that the doctor was talking about having a crooked leg.

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@sueleerock

Sorry about that. I have moved once a year lately, no longer have access to a computer, but i believe the site had the words hepatitis c in the title, can't remember. Thanks for letting me know that the doctor was talking about having a crooked leg.

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Also, for any of you that have debilitating fatigue, i tried white kratom recently, it works.

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@sueleerock

Also, for any of you that have debilitating fatigue, i tried white kratom recently, it works.

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It helps a lot for pain too. Take it on an empty stomach. I am very surprised, i have never had a plant based product work. It is not something u can use everyday because you build up a tolerance to it.

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@acer16

Thanks. I read about depression and “my bouts with mental troubles”. These stories always, always, always end with “and then I got better”. Or “this to shall pass”. Well, that doesn’t do me any good. Like you, it gets worse everyday. For over 20 years. So now I know someone who’s ending is like mine. Not good. I hear, “at least you’re cured”. Fuck that. I got cured from a disease that had no symptoms and now I’m screwed. For a very long time. Every day is struggle. I’m worn out and there’s no end in sight.

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u r absolutely right!! my life is done n im only 57, 8 yrs post tx. i was a rn n have a mph n cant hardly get out of bed. i feel my life is over with no end in sight, im so sorry that u have to endure this also xo

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HEY EVERYONE!! EVERYONE NEEDS TO TURN THESE DRUGS IN TO FDA ADVERSE EFFECT WEB SITE!! UNTIL WE TURN IN THE S/E THEY DON'T KNOW, I DID ABOUT A YR AGO N JUST WROTE THEM A LETTER YESTERDAY. THIS IS A MUST IF WE WANT TO GO AFTER THEM!!!!! XO

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I went thru Interferon and ribovirin poisioning with a full year complement and have not been the same ever since! Mental and physical fatigue, high blood pressure, diabetes, anemia,skin rashes, poor sleep and on pain medication for years just to operate on a daily basis... after exploring the facts that I was never a drug addict, homosexual, or any other blood exposure I began to investigate my life... I discovered that while I was processed thru the military they injected me with a jet gun and was exposed to hundreds of other humans blood as it was spread... shortly after was hospitalized twice with serious fever, rash, and almost died... diagnosed in 1972 with ARDS and have never been the same since that experience... the Veterans Administration denies any culpability in this process but, if it was anymore obvious a blind person can see it... I have lost faith in the medical community as they have knowledge yet they are controlled not to discuss... I now know as I took a year to investigate this and, have proof positive the US Government spread Hep C thru out the population thru faulty practices and lie and conceal the truth... need help with getting medical care from the VA without a bill associated with what they caused???

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Here I am sitting down as I had trouble standing for prolonged periods!!!

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