Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

Liked by bt56

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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@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!!

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I hear u my friend am 10 years since treatment and lost my marriage the doctor doesn't want to hear as you said it poisoned our body's

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@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

Jump to this post

Hello egosta
I also have a similar story as do countless hundreds of others too. I was given blood transfusions in 1988 after childbirth.After which I developed extremely heavy ladies times. The treatment for that was iron supplements. Shortly after that I developed acute jaundice and was hospitalised but after several blood tests etc was dischargedwith no diagnosis.Eventually after much rest my body recovered and life continued and I had two miscarriages over the next couple of years both with haemorrhage. So I requested sterilisation as to avoid any further heart ache. Again I recovered and decided to train as a Nurse and succeeded. It was in 2003 my Hep C was diagnosed after a needle stick injury at work. Still I continued with my life and the Interferon and Rabivirin treatment began. It was hellish every side effect thinkable was endured. During that time a blood test result said undetectable but the treatment continued. Eventually after a year I became too ill to continue the treatment. During all of this my life was ruined my career was ended as I was deemed incapable to practice and was forced to early retirement . My marriage ended and I also lost my house. Those symptoms remained the aching bones the swollen belly digestive problems foggyness confusion panic attacks and of course the fatigue. I had my gall bladder removed as gall stones where suspected I was tested for cancer of my womb etc all negative results. Over the years and many many fruitless assessments from various GP appointments drew blank. So I gave up and accepted my ill health as my lot and at least I was cured of hep c . 12 years on my long term fatigue aches and pains and cognigitive problems remain. Later I found out my blood tranfusuion had been TRACED back to the USA by gender. Thousands of people also contracted HIV/AIDS and have died or are in final stages of cirrhosis. I'm one of the lucky ones that survived but waiting now for further tests and liver scan results from a review as in the UK much care is being employed to detect Hep C.now that the infected blood tragedy is acknowledged.The Heptologist assured me that the new drugs are much better but I'm not convinced……my heart goes out to all who were/affected by Hep C

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Hello
There is much info on the internet about long term effects of those drugs if you have time to search you will learn much some research is in progress too If allowed on here I will try to send a link on an article I found recently

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@jwbeenie

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?

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Indeed. 12 years on I also have an appointment pending.

Liked by foggymama23

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@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 understand your frustrations my story is similar and still have those lingering symptoms 12 years on and also severe head aches ?clusters?migraine? They can last a few days and come and go. No pain killers work. I cannot bend down and have to 'sleep upright. I have even had Brain scans but nothing has been found to find out why so my latest diagnosis was to try some neck exercises or have massage!!!

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@freehepc

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

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I'm sorry to hear that. This is not admitted o the media. Hep C virus can sometimes remain undetected especially in damaged parts of the liver so I have read in extensive research. I hope you will overcome the hep c with better treatments

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@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 believe there are probably thousands of people on the world suffering long term ill health since drug treatment for Hep C. There is much info on research to prove it. You are not crazy. It's only others sharing these worries that brings some solace

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@ldestella

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!

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Good luck and stay strong I hope you get the support you need to win

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@jenglereckedbin

Hello egosta
I also have a similar story as do countless hundreds of others too. I was given blood transfusions in 1988 after childbirth.After which I developed extremely heavy ladies times. The treatment for that was iron supplements. Shortly after that I developed acute jaundice and was hospitalised but after several blood tests etc was dischargedwith no diagnosis.Eventually after much rest my body recovered and life continued and I had two miscarriages over the next couple of years both with haemorrhage. So I requested sterilisation as to avoid any further heart ache. Again I recovered and decided to train as a Nurse and succeeded. It was in 2003 my Hep C was diagnosed after a needle stick injury at work. Still I continued with my life and the Interferon and Rabivirin treatment began. It was hellish every side effect thinkable was endured. During that time a blood test result said undetectable but the treatment continued. Eventually after a year I became too ill to continue the treatment. During all of this my life was ruined my career was ended as I was deemed incapable to practice and was forced to early retirement . My marriage ended and I also lost my house. Those symptoms remained the aching bones the swollen belly digestive problems foggyness confusion panic attacks and of course the fatigue. I had my gall bladder removed as gall stones where suspected I was tested for cancer of my womb etc all negative results. Over the years and many many fruitless assessments from various GP appointments drew blank. So I gave up and accepted my ill health as my lot and at least I was cured of hep c . 12 years on my long term fatigue aches and pains and cognigitive problems remain. Later I found out my blood tranfusuion had been TRACED back to the USA by gender. Thousands of people also contracted HIV/AIDS and have died or are in final stages of cirrhosis. I'm one of the lucky ones that survived but waiting now for further tests and liver scan results from a review as in the UK much care is being employed to detect Hep C.now that the infected blood tragedy is acknowledged.The Heptologist assured me that the new drugs are much better but I'm not convinced……my heart goes out to all who were/affected by Hep C

Jump to this post

Hi.thats horrendous what u have endured ave been know where near that much suffering you have had to endure, but I have lived wife the longterm side effects of interferon and I have had chronic pain mood swings depression brain fog memory loss and I have been on and of painkillers for years , only last week I decided to give C.B.D a try its the none addictive extract from the cannabis plant its sold over the counter in my health shop , I have noticed a massive change in one week I feel alot more relaxed and happy for the first time in years the pain in my kneck and hip its none existing , if its a placebo effect them so be it this last week has been like a miracle

Liked by jenglereckedbin

REPLY
@elgosta

Hi.thats horrendous what u have endured ave been know where near that much suffering you have had to endure, but I have lived wife the longterm side effects of interferon and I have had chronic pain mood swings depression brain fog memory loss and I have been on and of painkillers for years , only last week I decided to give C.B.D a try its the none addictive extract from the cannabis plant its sold over the counter in my health shop , I have noticed a massive change in one week I feel alot more relaxed and happy for the first time in years the pain in my kneck and hip its none existing , if its a placebo effect them so be it this last week has been like a miracle

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Wow! That sounds amazing. Do you live in the UK? If so I will visit the health shop near me pronto 😃

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@jenglereckedbin

Wow! That sounds amazing. Do you live in the UK? If so I will visit the health shop near me pronto 😃

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Am in north of England holland& barret I started on 2.5 it goes to up to 5pc bit even the depression is lifting

Liked by jenglereckedbin

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@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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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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@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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Yes. Probably thousands of us with similar problems as a result of the treatment . Interferon and Rabivirin

Liked by ldestella

REPLY
@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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I'm sure you will find info from the internet google etc medical research. I'm sure I red somewhere about Roach or other as a drug manufacturing company but don't quote me

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