Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

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Probably not, how do we find out? Is there a moderator on this site that can help with this please?

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@baberuth13

Why won’t lawyers touch this ? I know big pharma is corrupt but is it so corrupt that a treatment causes this much damage in all of our lives ?

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Honey I have no clue why no one will help us n it's just depressing

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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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@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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Terry so sorry to hear that you are going through such a hard time , I contracted hepc through heroin use as well , I did the treatment back in 08 as well it completely destroyed my life lost my marriage as well so I understand the sense of loss you are in and going through , the thing is you are not alone as there are many of us here on this site who have been destroyed through the treatment but to know you aren't alone is a great comfort you can message me privately if you want.

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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!

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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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@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.

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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!!

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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

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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

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