Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

Liked by bt56, denisefinn

@elgosta

I started treatment for hep-c back in the summer of 08 , it was horrendous the 6 months on it , I honestly thought life would get back to normal but 10 years down the line I feel as if the life has been sucked out of me , from the top of my head to the sole of my feet I am in chronic pain , my memory is terrible I forget things all the time my work colleagues names for instance who ave known for years its like its just not there , new symptoms on chronic pain is my shoulders and knees , there should be something done about as in good faith we enter into the treatment maybe the dark truth is we where guinea pigs and the makers have known all along of the potential long term side effects

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I just found this site. I took interferon injections for 6 months, relapsed hep c, then one year of injections 3 mil units, 3 times a week. That was 1994-1996. Horrible suffering, for what? For years they denied long term effects. I could never return to nursing or any substantial work, I blamed myself and wihdrew from life. I knew it was the treatment, but who would listen. I suffer from most of the symptoms that I see others are suffering from. Neurologic peripheral and central, cardiac, muscle weakness, fatigue, sleep disorders, pain, psychiatric, vision. Not wanting to be the complainer, I withdraw. I want answers now. Thanks everyone for sharing. Things make sense now.

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@ldestella

hello,
I feel ya, I have a MPH n am a RN n also have a degree in administration…most days I can barely make it to the couch from bed. I have had 4 lawyers turn me down and none of my docs will acknowledge my severe issues. Does anyone know exactly whom makes the interferon n ribaviron? I haven't found anything solid…or if I did, I have forgotten. I can not retain any new info anymore…executive brain function disorder from this!!! Pls everyone…we need to pull together somehow n fight this!! xo

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Yep. I worked all the critical care departments, also OR and GI Lab. Lost my career, self identity, health, and my mind. I am not nuts but the depression and anxiety has reduced my coping mechanisms for sure. I hate self pity, but who else is gonna care, right? Nobody wants to hear it. Glad I found a place to vent.

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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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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.

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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Am in the uk and I have looked and looked but found nothing , surely something has to be done.about it

Liked by jenglereckedbin

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@foggymama23

I find it absolutely crazy that NONE of my doctors know anything about this or there hasn’t been enough studies done on it. 18 year’s ago I was involved in a study for Hep C drugs. 18 years ago I was 20 years old & had the liver of a 65 year old alcoholic so this study was a miracle for me to find & then be included in. I did so many different medications over the course of 2 years, I can’t even tell you what all I took. What I can tell you is that, 18 yrs later I get lost driving to my mothers house or taking my kids somewhere we’ve been multiple times. I can’t remember much & forget a lot more than I should, on a daily basis. I’ve been a stay at home mom for 14 yrs, which was an easy way to “hide” everything…plus “mommy brain” has always been a huge excuse. Then I was given Adderall & I did so good, it was a different world, but only for about 3 years. Now my dr won’t increase my dose & I’m stuck “all over the place.” Besides the fog & memory issues, math has become increasingly hard. My body aches, my joints hurt, my hair has turned 98% grey & I can’t lose weight to save my life! I feel so much older than 37. I wish there was more information on the long term effects of interferon on your brain/ body. I am convinced it’s what has destroyed me. I’ve cleared the virus for over 15 yrs now but the way I feel on a daily basis has me questioning if it was worth it.

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What you have shared helps me understand my life and frustrations and disappointments. Everything sounds similar. How many of us are out there? The vague "fibromyalgia " diagnosis is an insult to our intelligence. Our diagnosis should be post interferon syndrome. It should be recognized and acknowledged for its debilitating effects and pharmaceuticals need to take responsibility for it.

Liked by jenglereckedbin

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@marleneruth

Yep. I worked all the critical care departments, also OR and GI Lab. Lost my career, self identity, health, and my mind. I am not nuts but the depression and anxiety has reduced my coping mechanisms for sure. I hate self pity, but who else is gonna care, right? Nobody wants to hear it. Glad I found a place to vent.

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Its been horrendous 10 years of my life gone health getting worse the depression has been terrible the chronic fatigue wipes u out the memory issues its bad like yourself you could go on and on but am glad I found this site I realise am not alone

Liked by jenglereckedbin

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@marleneruth

What you have shared helps me understand my life and frustrations and disappointments. Everything sounds similar. How many of us are out there? The vague "fibromyalgia " diagnosis is an insult to our intelligence. Our diagnosis should be post interferon syndrome. It should be recognized and acknowledged for its debilitating effects and pharmaceuticals need to take responsibility for it.

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I totally agree with you , I wonder if social media could help start spreading what this medication has destroyed life's

Liked by jenglereckedbin

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@marleneruth

Yep. I worked all the critical care departments, also OR and GI Lab. Lost my career, self identity, health, and my mind. I am not nuts but the depression and anxiety has reduced my coping mechanisms for sure. I hate self pity, but who else is gonna care, right? Nobody wants to hear it. Glad I found a place to vent.

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Hi!!!!
So glad u found us!! I found this site almost a yr ago and it DOES put everything into perspective. I couldn't figure out why I felt so bad for so long until this site. I just don't know what to do anymore. Would like to talk to u more if ok with u!

Lisa

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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There was a class action law suit but it has been closed for a long time n they wouldn't even give me the time of day. Let's keep digging and I will get with uall asap if i come up with anything.

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@ldestella

Hi!!!!
So glad u found us!! I found this site almost a yr ago and it DOES put everything into perspective. I couldn't figure out why I felt so bad for so long until this site. I just don't know what to do anymore. Would like to talk to u more if ok with u!

Lisa

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Its good to talk about it and would like to talk more about it
Steven

Liked by jenglereckedbin

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any time brother lol lot's of questions also…pls pm me for my number if ya want!!

Liked by jenglereckedbin

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@ldestella

any time brother lol lot's of questions also…pls pm me for my number if ya want!!

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Am in the uk , send me a private email

Liked by jenglereckedbin

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@elgosta

Am in the uk , send me a private email

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Welcome to send me a private message as well.

Liked by jenglereckedbin

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Hi @elgosta and @ldestella,

You may notice that I removed your personal email from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message PM, as it is a secure, private option.
Here's how to send private message.
1. Click the member's @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

Thanks so much for understanding.

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@kanaazpereira

Hi @elgosta and @ldestella,

You may notice that I removed your personal email from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message PM, as it is a secure, private option.
Here's how to send private message.
1. Click the member's @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

Thanks so much for understanding.

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Sharon

Liked by ldestella

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