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jerbobs
@jerbobs

Posts: 12
Joined: Jan 27, 2018

Post Interferon Syndrome

Posted by @jerbobs, Jan 31, 2018

What is known?

REPLY

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?

I found some letters i thought i lost and have tried to let go of my resentments.1-05-2010 was the beginning of my journey.
First time symtoms started. The only thing wrong was ifatigued and ankles swelling. My doctor found that my good cholestorol was bad. Bad cholestoral good.
Couldnt believe. 4-10-10 different dr different tests. Right groin was hurting.
Positive hep c. Genotype 1b.
6-30-2010 started treatment interferon and riba. After 8 weeks negative viral load. Responding .
40 weeks later with pegysus. Treatment stopped. Hepc free. Grateful. Destroyed i am!

Liked by jenglereckedbin

Hi! I'm 3 years post interferon Alpha tx, 5 wk induction and 48 wks 3x per wk shots. I'm thankful to haver survived stage 3 metastatic melanoma but I just can't seem to shake the side effects. I though it was all in my head until I found this forum!! I still have the fatigue, body aches, depression, anxiety, brain fog, plus I've developed migraines! My doctors don't really hear me. How do I make them understand that it's not in my head, that my body still hurts, honestly I feel like I've been poisoned and just just can't flush it out!!

@ldestella

Hi, I am 7 yrs post INTERFERON/RIBAVIRON tx and my life is ruined! My memory is so bad now I have no idea why I walked into a room or where I parked at store. I was a thriving RN/MPH and now I have CVID from the tx's. I am in so much pain all of the time it's hard to function. My personality has changed, I now have an autoimmune dx called sjogrens syndrome…life is hell for me anymore. PLs let me know how u r doing n if u r going thru all of this…thx lisa

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I've treated 2x with interferon and ribavirin Both treatments worked for 3 months Then back with a vengance.

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.

@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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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

@johnwhitfield

15 years after taking interferon and ribavirin I am still having problems with memory. Is this problem from my treatment?

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@johnwhitfield

I’m in the same boat. 18 years later, 37 years old & I feel like I am a complete mess! Have you had any help from any of your doctors?

@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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Thank you so much for this! @Idestella
I appreciate it more than you know. 18 years post-treatment, not one doctor has said they believe all my symptoms are linked to treatment but I know they are. Just one more thing to make ya feel crazy!

@foggymama23

Thank you so much for this! @Idestella
I appreciate it more than you know. 18 years post-treatment, not one doctor has said they believe all my symptoms are linked to treatment but I know they are. Just one more thing to make ya feel crazy!

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Hi, I just went into the FDA website n turned these drugs in and told them everything that I am going thru. I would advise that everyone do that and maybe we'll get noticed a little quicker. I will not let this go…to many of us suffering and they will know me soon (big pharma)!! It took me 7 yrs to figure this all out n have notified all of my doctors…joke there. Lawyers keep turning me down. I will get the attention that it deserves before I die…which feels like everyday anymore!

@freehepc

I've treated 2x with interferon and ribavirin Both treatments worked for 3 months Then back with a vengance.

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Yep, me too!! This is just not right

Liked by jenglereckedbin

@ldestella

Hi, I am 7 yrs post INTERFERON/RIBAVIRON tx and my life is ruined! My memory is so bad now I have no idea why I walked into a room or where I parked at store. I was a thriving RN/MPH and now I have CVID from the tx's. I am in so much pain all of the time it's hard to function. My personality has changed, I now have an autoimmune dx called sjogrens syndrome…life is hell for me anymore. PLs let me know how u r doing n if u r going thru all of this…thx lisa

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Hi there. You are not goung mad there are hundreds probably thousands of people going through the same post Interferon treatment 😉

Liked by foggymama23

@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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Hi there. I understand your problems. Try to stay strong 😉

Hello everyone, I've been trying to find a research group that is willing to seriously look into the issue of long term side effects of interferon. It seems that post treatment there are a high amount of Fibromyalgia, Sjogrens, Chronic Fatigue syndrome, and CVID diagnosis. I have written letters and spoken with my gastroenterologist regarding these issues. His response was that there is no known research stating long term issues. Which in return I actually showed him forum after forum of frustrated people with all the same symptoms and said, "this can't all be a coincidence!" If there aren't any studies on this then How do I get one started? All of our issues began with interferon tx. If anyone on here is interested in helping get some serious research on this or has any info or ideas please let me know.

@jenmae

Hi! I'm 3 years post interferon Alpha tx, 5 wk induction and 48 wks 3x per wk shots. I'm thankful to haver survived stage 3 metastatic melanoma but I just can't seem to shake the side effects. I though it was all in my head until I found this forum!! I still have the fatigue, body aches, depression, anxiety, brain fog, plus I've developed migraines! My doctors don't really hear me. How do I make them understand that it's not in my head, that my body still hurts, honestly I feel like I've been poisoned and just just can't flush it out!!

Jump to this post

I am a stage 3 malignant melanoma survivor. I did the interferon and stopped in August of 2018. I still have side effects, blurred vision, chemo brain, neuropathy, bone and muscle pain very severe. Severe tiredness, heart rate stays around 99 to 110 all the time now. My life has changed to just trying to get out of bed and go to the couch. Before all this I worked 60 hours a week, doing contacts, negotiating, traveling, cost savings and avoidance, spreadsheets,etc. To having someone help me fill this out. We need answers and the drug company needs to own up to this. I am now trying for my disability due to all of this. I am so upset with the way I am now.

Liked by jenglereckedbin

@jwbeenie

Hello everyone, I've been trying to find a research group that is willing to seriously look into the issue of long term side effects of interferon. It seems that post treatment there are a high amount of Fibromyalgia, Sjogrens, Chronic Fatigue syndrome, and CVID diagnosis. I have written letters and spoken with my gastroenterologist regarding these issues. His response was that there is no known research stating long term issues. Which in return I actually showed him forum after forum of frustrated people with all the same symptoms and said, "this can't all be a coincidence!" If there aren't any studies on this then How do I get one started? All of our issues began with interferon tx. If anyone on here is interested in helping get some serious research on this or has any info or ideas please let me know.

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We need to, this is terrible the way we live now

Liked by jenglereckedbin

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