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
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.
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
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
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
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
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
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.
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
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.
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
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.
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.
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.
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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Wow! That sounds amazing. Do you live in the UK? If so I will visit the health shop near me pronto 😃
Am in north of England holland& barret I started on 2.5 it goes to up to 5pc bit even the depression is lifting
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1 Reactionhello,
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
Yes. Probably thousands of us with similar problems as a result of the treatment . Interferon and Rabivirin
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1 ReactionI'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
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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Helpful -
Hug
2 ReactionsYep. 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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Helpful -
Hug
3 ReactionsWe 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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1 ReactionAm in the uk and I have looked and looked but found nothing , surely something has to be done.about it
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1 ReactionWhat 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.
-
Like -
Helpful -
Hug
2 Reactions