My life , like so many of you is the same. Brain fog dimentia like state. Unable to function some days. No energy ever. Eyesight suffering. Pain esp my back muscles. Autoimmune problems. Bone and muscle issues. You name it. I got it. Post interferon and ribavirin
Ditto! My only salvation in '04 after completing 9 mos of interferon in '01 a mighty fine psychiatrist granted me SSD! Some of my side effects have abated..like less arthritis pain..less memory problems, and of course cleared hep c now for 19yrs!
,
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 I'm 62 now and live in UK.
In 1988 I had NHS blood transfusions for haemorrhage during delivery. Several months later I was admitted to hospital with severe jaundice. I was discharged after a week of tests and rest with a diagnosis of ' you have a non A non B virus and like the flu it will pass'.
As a Mum of three and a full time Nurse my life was very busy but I was always so tired my eyes had a yellow hue and black circles even now. The numerous visits to the GP over the years just resulted in more iron tablets not to mention the horendous heamorrhage type periods each months . I was never offered any medication for that I had to use baby disposable nappys. Yes its embarrassing to discuss but that's a part of my life. I also suffered two miscarriages at around 16 weeks after the 1988 birth. No investigation was made and with no babys to see ?there was no closure.
Life continued but my health was decreasing with terrible pain in my abdomen that made me pass out sometimes migraines tiredness etc. In 1999 I had a grand fit and a benign brain tumour was found so in 2000 that was removed. Recovery from that was slow but i gradually returned to work. The pains in my abdomen were getting more frequent and when i collapsed at work in 2002 i was rushed to theatre with suspected appendicitis. Instead I had my gallbladder removed there were no stones but I was told by the surgeon ' it's not an important organ anyway'!!.
In 2003 a blood test showed me as HCV positive and it was traced back by my specialist to my 1988 transfusions.
My liver was in stage 3 level damage but luckily not at the necrotic stage.
I was too I'll for treatment but after rest and medication my treatment of Interferon/Rabivirin began in Autumn 2005.
Although after 9 months and a massive decline in my health the treatment cleared the HCV.
My hair had fallen out and my health was very poor with constant tiredness foggy ness aching bones and joints. Sleep never eased the tiredness I couldn't continue to work and i had ' forgotten' so many things my work procedures and even peoples names and family members events etc etc. I began to think i was going insane. I became like jeckyl and Hyde impossible to be around and I couldnt cope with other people. My partner had left years back my older children had fled the nest but my younger daughter still lived with me and with no income we had to live on 58 pound a week benefit. Eventually we were homeless as our home was repossed.
My ill health remained and after a final attempt at returning to work I was given an early retirement on grounds of CFS and 'Epilepsy'. (I have not had a fit since 2000 which was post op trauma induced)
My youngest daughter moved in with her boyfriend all my furniture etc was given away and I moved into a room.
Fast forward now I'm still here I survived I'm lucky and after several moves over the years I'm blessed with Grandchildren and luve near to my daughters.
Last year I was diagnosed again officially with CFS/ME and my GP signed a note to say it was more than likely caused by my HCV
I believe we have all been left the legacy of CFS/ME post Interferon/Rabivirin treatment. There needs to be an investigation and compensation from the drug company's
Hello Becky,
I was treated for 12 months with the highest dose. It is ironic that the doctor’s who gave me the hep c with their unnecessary/negligent exploratory surgery on me when all I needed was a laxative. That was 1976, and they didn’t find the hep until 1998, by then I was really sick.
I too am on disability for back issues and hep c. And you know what really sucks about this. They told me the drug would maybe take away the hep c, I would get a good job again, and life would be great. They also said side effects were rare!
Here is what happened to me; mucous membranes dried up, ear wax disappeared and was replaced with a dry sandy substance in my ear, it took ten years for my ears to return to normal. My eyes were so dry I had a hard time opening them, went to the eye doctor and was told it was the worse case of dry eye she had ever seen. I must not forget to add that during treatment I developed a floater in my left eye. I now have a cataract and I was told if my head is ever jerked hard my retina will detach!
Rash called tinea amiantacea on my scalp that never goes away.
Overactive bladder where I have to urinate 30 times a day.
The most severe injury was damage to my long legs, it started on treatment, never had pain in my legs before. The pain never goes away. Severe damage to my bones. This happened on interferon, but they love to say it is part of aging!!!!! No, I had a bone density test previous to being put on this drug and had the bones of a 20 year old, so that analogy don’t fly. My knee was especially affected by this drug during treatment. Same knee I need knee replacement on now. Did a lot of research and I am really angry, these drugs were known to fry the bones. The doctor’s were supposed to be giving us bone density tests while on treatment to determine whether that was happening and decrease our dose, never happened!!!!!
I also cannot get my words out in an orderly fashion.
I feel I will be crippled soon with the damage that was done to my bones. I do not want knee replacement. I used to be 5’11”, I am now 5’7”. This drug ruined my life.
Sue..I think you are addressing me..and ty for reminding me of the other side effects I forgot...I'm also grateful for the new treatments as this ds is not going away. Peace and Love...Becky
Sue..I think you are addressing me..and ty for reminding me of the other side effects I forgot...I'm also grateful for the new treatments as this ds is not going away. Peace and Love...Becky
I don’t know what I am doing on these websites. I will be meeting in October with my previous liver doctor. If only I had stayed with him for interferon therapy. I do believe he would have followed the protocols in place. But he was too far away and this treatment required us to be at the doctor’s every week. I want to ask him how this could have happened! How can they put people on this medicine and do nothing to protect us!!!! Did anyone on here get a bone density test, eye exam, heart exam, etc. etc.
I had weekly treatment for 8 months with Pegintron and Ribavirin in 2001. At the time, I was almost 48 and already having some symptoms that could have been easily caused by my age: eye changes, early menopause, muscle aches, "meno-brain" (fog and forgetfulness), and fatigue. I'm just curious: How old were some of you when you started treatment? I'm wondering if some of the changes we've all seen were sort of a speeding up of the aging process. Not all people age well. In that case, maybe they didn't test it on enough people in an older age group? Or maybe they did, but hoped the outcome (no liver cancer or cirrhosis) would be better than just advancing the aging process? I don't know, and I'm not defending the pharmaceutical companies because I'm a DES Daughter, too, and realize that not all companies were (or are) as ethical or as thorough as they should have been.
I was on interferon for a over a year I haven't been the same since I have memory loss I am in pain all the time in my joints and muscles also I have migraine headaches daily some lasting 4-5 days are there any lawsuits filed against this yet there really should be!!!!!
I was on interferon for a over a year I haven't been the same since I have memory loss I am in pain all the time in my joints and muscles also I have migraine headaches daily some lasting 4-5 days are there any lawsuits filed against this yet there really should be!!!!!
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We need to file another major lawsuit
My life , like so many of you is the same. Brain fog dimentia like state. Unable to function some days. No energy ever. Eyesight suffering. Pain esp my back muscles. Autoimmune problems. Bone and muscle issues. You name it. I got it. Post interferon and ribavirin
Ditto! My only salvation in '04 after completing 9 mos of interferon in '01 a mighty fine psychiatrist granted me SSD! Some of my side effects have abated..like less arthritis pain..less memory problems, and of course cleared hep c now for 19yrs!
,
Hi I'm 62 now and live in UK.
In 1988 I had NHS blood transfusions for haemorrhage during delivery. Several months later I was admitted to hospital with severe jaundice. I was discharged after a week of tests and rest with a diagnosis of ' you have a non A non B virus and like the flu it will pass'.
As a Mum of three and a full time Nurse my life was very busy but I was always so tired my eyes had a yellow hue and black circles even now. The numerous visits to the GP over the years just resulted in more iron tablets not to mention the horendous heamorrhage type periods each months . I was never offered any medication for that I had to use baby disposable nappys. Yes its embarrassing to discuss but that's a part of my life. I also suffered two miscarriages at around 16 weeks after the 1988 birth. No investigation was made and with no babys to see ?there was no closure.
Life continued but my health was decreasing with terrible pain in my abdomen that made me pass out sometimes migraines tiredness etc. In 1999 I had a grand fit and a benign brain tumour was found so in 2000 that was removed. Recovery from that was slow but i gradually returned to work. The pains in my abdomen were getting more frequent and when i collapsed at work in 2002 i was rushed to theatre with suspected appendicitis. Instead I had my gallbladder removed there were no stones but I was told by the surgeon ' it's not an important organ anyway'!!.
In 2003 a blood test showed me as HCV positive and it was traced back by my specialist to my 1988 transfusions.
My liver was in stage 3 level damage but luckily not at the necrotic stage.
I was too I'll for treatment but after rest and medication my treatment of Interferon/Rabivirin began in Autumn 2005.
Although after 9 months and a massive decline in my health the treatment cleared the HCV.
My hair had fallen out and my health was very poor with constant tiredness foggy ness aching bones and joints. Sleep never eased the tiredness I couldn't continue to work and i had ' forgotten' so many things my work procedures and even peoples names and family members events etc etc. I began to think i was going insane. I became like jeckyl and Hyde impossible to be around and I couldnt cope with other people. My partner had left years back my older children had fled the nest but my younger daughter still lived with me and with no income we had to live on 58 pound a week benefit. Eventually we were homeless as our home was repossed.
My ill health remained and after a final attempt at returning to work I was given an early retirement on grounds of CFS and 'Epilepsy'. (I have not had a fit since 2000 which was post op trauma induced)
My youngest daughter moved in with her boyfriend all my furniture etc was given away and I moved into a room.
Fast forward now I'm still here I survived I'm lucky and after several moves over the years I'm blessed with Grandchildren and luve near to my daughters.
Last year I was diagnosed again officially with CFS/ME and my GP signed a note to say it was more than likely caused by my HCV
I believe we have all been left the legacy of CFS/ME post Interferon/Rabivirin treatment. There needs to be an investigation and compensation from the drug company's
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1 ReactionSue..I think you are addressing me..and ty for reminding me of the other side effects I forgot...I'm also grateful for the new treatments as this ds is not going away. Peace and Love...Becky
I don’t know what I am doing on these websites. I will be meeting in October with my previous liver doctor. If only I had stayed with him for interferon therapy. I do believe he would have followed the protocols in place. But he was too far away and this treatment required us to be at the doctor’s every week. I want to ask him how this could have happened! How can they put people on this medicine and do nothing to protect us!!!! Did anyone on here get a bone density test, eye exam, heart exam, etc. etc.
I had weekly treatment for 8 months with Pegintron and Ribavirin in 2001. At the time, I was almost 48 and already having some symptoms that could have been easily caused by my age: eye changes, early menopause, muscle aches, "meno-brain" (fog and forgetfulness), and fatigue. I'm just curious: How old were some of you when you started treatment? I'm wondering if some of the changes we've all seen were sort of a speeding up of the aging process. Not all people age well. In that case, maybe they didn't test it on enough people in an older age group? Or maybe they did, but hoped the outcome (no liver cancer or cirrhosis) would be better than just advancing the aging process? I don't know, and I'm not defending the pharmaceutical companies because I'm a DES Daughter, too, and realize that not all companies were (or are) as ethical or as thorough as they should have been.
I was on interferon for a over a year I haven't been the same since I have memory loss I am in pain all the time in my joints and muscles also I have migraine headaches daily some lasting 4-5 days are there any lawsuits filed against this yet there really should be!!!!!
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1 ReactionNo, but if you look at the other emails you will see info on a podcast you can take part in.