Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

Liked by bt56

@terry1904

Hello my name is Terry and after finding this site I realize that I'm really not losing it well lemme correct that since my 46 weeks of shots and white horse pills in 2008 . I forget what it is I forgot, I stay in a state of depression , after 5 years clean from heroin use I relapsed and as a result I lost my girl, my job and a home.( I now reside in a tent in a park) basically waiting to die. Although I've worked and payed into SSDI since I've been 15 ( I'm now 50) I still can't get help. Now I know I'm not alone this site just may have saved a life today. Thank you and keep on keepin

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I received social security disability because of my hep c, and back. I fought hard for disability, received it in 2003, did treatment for a yr. 2008. You need to find an attorney who can help you. I cannot imagine how hard it must be to live in a tent. You had me laughing though when you said i forgot what it was i forgot. LOL. I'm happy to know on monday my sister is buying me a computer, no more one finger thing. I plan on printing out everything. The protocols the doctor's were suppose to have followed, but didn't. I may be sick from tratment, but I'm never too sick to get justice.

Liked by jenglereckedbin

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@marleneruth

We do need help. I am willing to get involved. I will go to the FDA site, and start doing some research. A class action suit must or should exist somewhere. This drug treatment was an unethical experimental treatment and we have been disregarded like some animal lab test group.

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I'm reading these old posts and what you have said is so right on. Come to find out the doctor's did not follow any of the protocols they were to follow in giving us these drugs as they were pocketing thousands of dollars for every prescription they wrote. We were their cash cow, nothing else!!

Liked by jenglereckedbin

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@sueleerock

I received social security disability because of my hep c, and back. I fought hard for disability, received it in 2003, did treatment for a yr. 2008. You need to find an attorney who can help you. I cannot imagine how hard it must be to live in a tent. You had me laughing though when you said i forgot what it was i forgot. LOL. I'm happy to know on monday my sister is buying me a computer, no more one finger thing. I plan on printing out everything. The protocols the doctor's were suppose to have followed, but didn't. I may be sick from tratment, but I'm never too sick to get justice.

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Keep up the fight sueleerock

Liked by jenglereckedbin

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@elgosta

Keep up the fight sueleerock

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Will do!

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@terry1904

Hello my name is Terry and after finding this site I realize that I'm really not losing it well lemme correct that since my 46 weeks of shots and white horse pills in 2008 . I forget what it is I forgot, I stay in a state of depression , after 5 years clean from heroin use I relapsed and as a result I lost my girl, my job and a home.( I now reside in a tent in a park) basically waiting to die. Although I've worked and payed into SSDI since I've been 15 ( I'm now 50) I still can't get help. Now I know I'm not alone this site just may have saved a life today. Thank you and keep on keepin

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Hi Terry
I just read your story,I'm a hep c survivor in UKvso treatment was free . It seems most people on here are in the USA, havd uou heard of Gregg ? He is in a Facebook page closed group called Hepatitis C Treatment, Cure and Community, he's the man who directs people to cheaper treatments. Please check him out and never hive up x

Liked by ldestella

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@jenglereckedbin

Hi Terry
I just read your story,I'm a hep c survivor in UKvso treatment was free . It seems most people on here are in the USA, havd uou heard of Gregg ? He is in a Facebook page closed group called Hepatitis C Treatment, Cure and Community, he's the man who directs people to cheaper treatments. Please check him out and never hive up x

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Never give up

Liked by ldestella

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@casassy

I went thru interferon ribivirian and incevick in 2011/2012 I wound up in a mental institution lost my mind was taken off the meds and sent home where I went into a year long clinical depression. The interfeone changed my life forever. I thought I could manage the mental diagnoses after interferon. However, now into my 9th year post I have suffered with chronic fatigue sent from one speaciliest to another they say its sleep apnea nope that's treated still exhausted . They say high blood sugars nope that's treated still exhausted barley able to function at work. The say I'm not disabled well there is something wrong I M not the carefree wild girl that went into interferon. All of my dreams were smashed and I have suffered every day of the last 9 years . I had no idea others felt this way as well

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Hi casassy, I can relate 100% , be strong and never give up x

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@marko1

My question is to the mayo clinic is there anything that can be done for the people here on this site feel this way we’re all we doing here is talking I realize talking is great end it helps understanding that there are other people with the same health issues but it comes a time when action is needed
Thank you

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Still waiting…. Like where is the response?????????!!!!!#!!#

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Good morning all this question I wish the ask with mayo clinic moderator
It Hass to do with all these notes and feelings about post interferon and ribavirin extensive use of the drug to fight the hepatitis C illness with people who have taken this drug these drugs more than once for many years does the hail clinic and their doctors have any positive factual evidence that interferon and ribavirin can cause the symptoms of body pain memory loss vision loss and overall just sickness of the body and the body pain that goes along with it or or all of us who feel this simply being told what’s in our head ?
I asked this question because for myself I need to find some answers and I’m getting none from the people who treated me for 15 years where do we go

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I'm happy to have found this site. It's nice to know that you're not alone with post treatment issues. The old adage of "misery loves company" certainly applies. I read through all the posts and can relate to so many of the comments.

Apparently I had Hep C for almost 40 years, which went undiagnosed until my health started deteriorating to the point that I had to go on disability retirement. By then I had stage 4 cirrhosis and hepatic encephalopathy had started setting in. My gastroenterologist had wanted me to hold off treatment until the new drugs came online, which were in testing. Unfortunately, as more time passed he didn't think I should wait any longer and so I ended up going through the three drug cocktail program; interferon, ribavirin, and something else I can't think of at the moment back in 2011. That treatment program was to last a year, but ended at about six months because those nasty drugs were killing me.

Eight years later and I still have a lot of issues; pain, fatigue, nervous system issues, forgetfulness, brain fog, etc. I will admit the pain has reduced over the years. I quit taking pain meds two years ago, although I still have days I wish I hadn't. Pot helps the pain a bit, but definitely turns me into a couch potato with the ongoing fatigue issue. While these nasty drugs have cured many people without long-term complications, it appears there are a number of us that experience long term, even perhaps permanent, side effects.

Although I was taken off treatment early, it did clear the Hep C virus. But at what cost? There's no way I could possibly go back to work and maintain a job. I'm sick of seeing doctors and specialists for these ongoing issues so I don't see them any more. I just live with ongoing side effects and do the best I can. The only specialist that really provided any post-treatment help was the pain management specialist, but the Oxy Rxs only alleviated the pain symptoms and weren't a remedy for the underlying problem. I want to be whole again. I feel like I'm less than half the man I used to be.

That's my abbreviated story. I just thought I'd share it as it soothes the psyche a bit to know you're not alone dealing with long term health consequences. Best wishes to all of you.

Liked by ldestella

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@chasguy

I'm happy to have found this site. It's nice to know that you're not alone with post treatment issues. The old adage of "misery loves company" certainly applies. I read through all the posts and can relate to so many of the comments.

Apparently I had Hep C for almost 40 years, which went undiagnosed until my health started deteriorating to the point that I had to go on disability retirement. By then I had stage 4 cirrhosis and hepatic encephalopathy had started setting in. My gastroenterologist had wanted me to hold off treatment until the new drugs came online, which were in testing. Unfortunately, as more time passed he didn't think I should wait any longer and so I ended up going through the three drug cocktail program; interferon, ribavirin, and something else I can't think of at the moment back in 2011. That treatment program was to last a year, but ended at about six months because those nasty drugs were killing me.

Eight years later and I still have a lot of issues; pain, fatigue, nervous system issues, forgetfulness, brain fog, etc. I will admit the pain has reduced over the years. I quit taking pain meds two years ago, although I still have days I wish I hadn't. Pot helps the pain a bit, but definitely turns me into a couch potato with the ongoing fatigue issue. While these nasty drugs have cured many people without long-term complications, it appears there are a number of us that experience long term, even perhaps permanent, side effects.

Although I was taken off treatment early, it did clear the Hep C virus. But at what cost? There's no way I could possibly go back to work and maintain a job. I'm sick of seeing doctors and specialists for these ongoing issues so I don't see them any more. I just live with ongoing side effects and do the best I can. The only specialist that really provided any post-treatment help was the pain management specialist, but the Oxy Rxs only alleviated the pain symptoms and weren't a remedy for the underlying problem. I want to be whole again. I feel like I'm less than half the man I used to be.

That's my abbreviated story. I just thought I'd share it as it soothes the psyche a bit to know you're not alone dealing with long term health consequences. Best wishes to all of you.

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I'm of the opinion that all of us should have access to pain medication until the day we die, but that won't happen with the insurance i have. I'm also of the opinion that the doctors who treated me should be paying for ALL my medical appts. because they did not follow.protocols a physician was to follow in treating. My obit has both their names in it. I feel half of what i was too.

Liked by chasguy, colino

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@chasguy

I'm happy to have found this site. It's nice to know that you're not alone with post treatment issues. The old adage of "misery loves company" certainly applies. I read through all the posts and can relate to so many of the comments.

Apparently I had Hep C for almost 40 years, which went undiagnosed until my health started deteriorating to the point that I had to go on disability retirement. By then I had stage 4 cirrhosis and hepatic encephalopathy had started setting in. My gastroenterologist had wanted me to hold off treatment until the new drugs came online, which were in testing. Unfortunately, as more time passed he didn't think I should wait any longer and so I ended up going through the three drug cocktail program; interferon, ribavirin, and something else I can't think of at the moment back in 2011. That treatment program was to last a year, but ended at about six months because those nasty drugs were killing me.

Eight years later and I still have a lot of issues; pain, fatigue, nervous system issues, forgetfulness, brain fog, etc. I will admit the pain has reduced over the years. I quit taking pain meds two years ago, although I still have days I wish I hadn't. Pot helps the pain a bit, but definitely turns me into a couch potato with the ongoing fatigue issue. While these nasty drugs have cured many people without long-term complications, it appears there are a number of us that experience long term, even perhaps permanent, side effects.

Although I was taken off treatment early, it did clear the Hep C virus. But at what cost? There's no way I could possibly go back to work and maintain a job. I'm sick of seeing doctors and specialists for these ongoing issues so I don't see them any more. I just live with ongoing side effects and do the best I can. The only specialist that really provided any post-treatment help was the pain management specialist, but the Oxy Rxs only alleviated the pain symptoms and weren't a remedy for the underlying problem. I want to be whole again. I feel like I'm less than half the man I used to be.

That's my abbreviated story. I just thought I'd share it as it soothes the psyche a bit to know you're not alone dealing with long term health consequences. Best wishes to all of you.

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I've had 3 friends who died because they refused to take the medication. I have never met anyone who did not suffer long lasting side effects.

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@sueleerock

I've had 3 friends who died because they refused to take the medication. I have never met anyone who did not suffer long lasting side effects.

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I was on interferon for 26 months, interferon and Ribavirin for 6 months. 32 months total. That was in 2000, 20 years ago. Depression gets worse every day despite multiple meds.

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@colino

I was on interferon for 26 months, interferon and Ribavirin for 6 months. 32 months total. That was in 2000, 20 years ago. Depression gets worse every day despite multiple meds.

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Previous to being treated i woke up every morning feeling good and in good spirits. I now wake up with my eyes stuck together, massive pain issues, heartburn issues, insomnia, etc., i could make this list very long. It is not fair what happened, since they tell me it is too late for a lawsuit, the only recourse i have is to write my obit now with their names and every doctor who denies me the pain meds i need to want to stay alive.

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@sueleerock

Previous to being treated i woke up every morning feeling good and in good spirits. I now wake up with my eyes stuck together, massive pain issues, heartburn issues, insomnia, etc., i could make this list very long. It is not fair what happened, since they tell me it is too late for a lawsuit, the only recourse i have is to write my obit now with their names and every doctor who denies me the pain meds i need to want to stay alive.

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if I had to do it over I would choose death over life. This sucks. The Dr say we’ll cured, so there’s that.

Liked by ldestella

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