Hello everyone, I ask that maybe ya'll can share ur story, ur illnesses, n how interferon therapy has changed ur quality of life? pls, I know we can get this out. I just put my story up just now on Anchor.fm/lisa-destella3
Hi Iv just found this website and not sure what I’m doing 🤦♀️ I was diagnosed with ET essential thrombocytopenia back in 1998 and was put on peg interferon I was on it once a week for at least 15 years I ask to come of it about 8 years ago and have health issues ever since I have now been diagnosed with Fibro and have bad vision problems and other issues as there ever been any lawsuits bought forward or do you have any links for more info before I go back to my doctors.
Denise
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
Still suffering daily fro fibro created by pegysus interferon and ribavirin. Mood problems. Neuropsyiatric problems. Medicine resistant depression. Disability has denied me so many times.
No help from doctors, against Sanford policy to get involved in SS disability cases. So tired of pain . Any lawsuits for this dirty medicine? How are you?
Hi Iv just found this website and not sure what I’m doing 🤦♀️ I was diagnosed with ET essential thrombocytopenia back in 1998 and was put on peg interferon I was on it once a week for at least 15 years I ask to come of it about 8 years ago and have health issues ever since I have now been diagnosed with Fibro and have bad vision problems and other issues as there ever been any lawsuits bought forward or do you have any links for more info before I go back to my doctors.
Denise
It caused my fibro to sure. Government study on it. Nowadays no one dies from it they die from COVID19.. I havent heard of any lawsuits should be.
I had no idea of all the long term side effects . Nothing was ever explain to me. How brutal life would be
It isn't just the greed of big pharma. You don't need to look any further than your hospital consultant and your local GP. They earn a disgusting amount of money, and every time you crawl into see them and they do nothing for you they earn a heap more. They earn a heap when the nurse weighs you or checks your height. They earn another heap when you consult to a couple of medical students sitting in on the interview, they earn a heap more when they sell your data to Google or whoever. The whole system is driven and oiled by one thing - and it isn't patient care!
Thanks for the replies if only I knew what I know now 20 years ago would of never touched the stuff. I got in touch with the specialist I saw 10 years ago and she’s asked my doctor to do another blood test but Iv not got much hope. Like the previous comment said its all COVID now can’t even get into the doctors not that I want to go they just prescribe more drugs with more side effect.
It caused my fibro to sure. Government study on it. Nowadays no one dies from it they die from COVID19.. I havent heard of any lawsuits should be.
I had no idea of all the long term side effects . Nothing was ever explain to me. How brutal life would be
Hi Krista,
this is just so wrong. doctor's here in Lexington KY are acting like it doesn't exist and that I am an hypochondriac. My life is so horrible and painful that I would rather God took me out. interferon re-wired my immune system n have CVID...lifetime infusions. My bones are dwindling and have a lot of steel in 3 different area's of my body and more to come shortly. No one will help me n I am ready to give up on life! I am a RN and have a master's degree and can't hardly wipe my own bottom some days. who can help us, pls, i need help!!!
I am years post pegysus interferon and ribavirin tx. Still feeling ill. Neuropsychiatric problems getting worse. Ive been having trouble with hips . GP says its hip impingement. Orthotic doctor say nothing wrong
Had mri tuesday. He is looking for arteriovenous malformations which could cause brain aneurysm, stroke. Legs have vericous veins in legs . Maybe malformations in feet located where pulse can be taken. Still have depression that meds have no effect.
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!
For me it has to be 48 wks interferon and ribavirin. It was only thing different at the time. I have 23 different comorbidities that keep increasuing. Im 11yrs post tx.
Fibro. Feels as though ive been forgotten about.
In the 11 yrs how much money has been made. It makes my blood boil. Oh ya . Neuropsychiatric problems. My rage has grown. It was one of first side effects.
For me it has to be 48 wks interferon and ribavirin. It was only thing different at the time. I have 23 different comorbidities that keep increasuing. Im 11yrs post tx.
Fibro. Feels as though ive been forgotten about.
In the 11 yrs how much money has been made. It makes my blood boil. Oh ya . Neuropsychiatric problems. My rage has grown. It was one of first side effects.
Hello,
I am notified via email when there is comments made on this website.
I could not help but respond.
There is an ocean of people suffering. There is no help.
I would be curious to find out how many suicides have occurred from the aftereffects and misery of having taken this medicine.
As recently as last Monday I commented the same to a doctor, he looked at me like I was crazy.
I am dealing with so very many side effects it is a struggle to live every day. Last night I could not get to sleep because my scalp itches so bad, terrible lesions all over my scalp, the doctor called it tinea amiantacea.
They say I developed Sjorgren's from a year of treatment in 2008, but due to insurance coverage no one is helping. There really is no help for us.
Sorry to say. I no longer trust doctors, I see a naturopath now for care.
For me it has to be 48 wks interferon and ribavirin. It was only thing different at the time. I have 23 different comorbidities that keep increasuing. Im 11yrs post tx.
Fibro. Feels as though ive been forgotten about.
In the 11 yrs how much money has been made. It makes my blood boil. Oh ya . Neuropsychiatric problems. My rage has grown. It was one of first side effects.
And, I would also like to add that there is help and curiosity behind why people suffer from drugs given for other illnesses. But people associate Hep C as a drug addict's virus.
I received 7-8 pints of blood from people unknown in 1976.
But the point is, it should not matter how we got Hep C.
I feel this is one of the reasons people do not care. I get angry when I see other people getting empathy/sympathy for their grueling drug treatments. It has never been there for us.
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Hi Iv just found this website and not sure what I’m doing 🤦♀️ I was diagnosed with ET essential thrombocytopenia back in 1998 and was put on peg interferon I was on it once a week for at least 15 years I ask to come of it about 8 years ago and have health issues ever since I have now been diagnosed with Fibro and have bad vision problems and other issues as there ever been any lawsuits bought forward or do you have any links for more info before I go back to my doctors.
Denise
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1 ReactionStill suffering daily fro fibro created by pegysus interferon and ribavirin. Mood problems. Neuropsyiatric problems. Medicine resistant depression. Disability has denied me so many times.
No help from doctors, against Sanford policy to get involved in SS disability cases. So tired of pain . Any lawsuits for this dirty medicine? How are you?
It caused my fibro to sure. Government study on it. Nowadays no one dies from it they die from COVID19.. I havent heard of any lawsuits should be.
I had no idea of all the long term side effects . Nothing was ever explain to me. How brutal life would be
It isn't just the greed of big pharma. You don't need to look any further than your hospital consultant and your local GP. They earn a disgusting amount of money, and every time you crawl into see them and they do nothing for you they earn a heap more. They earn a heap when the nurse weighs you or checks your height. They earn another heap when you consult to a couple of medical students sitting in on the interview, they earn a heap more when they sell your data to Google or whoever. The whole system is driven and oiled by one thing - and it isn't patient care!
Thanks for the replies if only I knew what I know now 20 years ago would of never touched the stuff. I got in touch with the specialist I saw 10 years ago and she’s asked my doctor to do another blood test but Iv not got much hope. Like the previous comment said its all COVID now can’t even get into the doctors not that I want to go they just prescribe more drugs with more side effect.
Do you know where I’d find the government report please
I am years post pegysus interferon and ribavirin tx. Still feeling ill. Neuropsychiatric problems getting worse. Ive been having trouble with hips . GP says its hip impingement. Orthotic doctor say nothing wrong
Had mri tuesday. He is looking for arteriovenous malformations which could cause brain aneurysm, stroke. Legs have vericous veins in legs . Maybe malformations in feet located where pulse can be taken. Still have depression that meds have no effect.
For me it has to be 48 wks interferon and ribavirin. It was only thing different at the time. I have 23 different comorbidities that keep increasuing. Im 11yrs post tx.
Fibro. Feels as though ive been forgotten about.
In the 11 yrs how much money has been made. It makes my blood boil. Oh ya . Neuropsychiatric problems. My rage has grown. It was one of first side effects.
Hello,
I am notified via email when there is comments made on this website.
I could not help but respond.
There is an ocean of people suffering. There is no help.
I would be curious to find out how many suicides have occurred from the aftereffects and misery of having taken this medicine.
As recently as last Monday I commented the same to a doctor, he looked at me like I was crazy.
I am dealing with so very many side effects it is a struggle to live every day. Last night I could not get to sleep because my scalp itches so bad, terrible lesions all over my scalp, the doctor called it tinea amiantacea.
They say I developed Sjorgren's from a year of treatment in 2008, but due to insurance coverage no one is helping. There really is no help for us.
Sorry to say. I no longer trust doctors, I see a naturopath now for care.
Take care, sorry this happened to all of us!
And, I would also like to add that there is help and curiosity behind why people suffer from drugs given for other illnesses. But people associate Hep C as a drug addict's virus.
I received 7-8 pints of blood from people unknown in 1976.
But the point is, it should not matter how we got Hep C.
I feel this is one of the reasons people do not care. I get angry when I see other people getting empathy/sympathy for their grueling drug treatments. It has never been there for us.