I developed fibromyalgia, RA,still in constant pain,eyes are going,I see flashes in peripheral vision at night, hip impingment,shoulders giving out, anger and rage. Big pharma poisoned me plain and simple,dr who prescribed Pegysus to me retired never told me of the severity of this poison. Neuropsychiatric damage.
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!
Hello, I just started a podcast at ANCHOR.FM/LISA-DESTELLA3 please tell ur story, I've been in contact with Merck n it's not going to be pretty. We need to stick together
Lotta stress in every area of my life right now. Will be selling some gold for computer. There is a much better website for you to inform about your podcast than this. Hopefully, it still exists. Will let you know soon.
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’m Dennis from Dayton Ohio. My pain most days a 10. My allergy to nightshades has been discovered! I’m still fighting. But running out of fight
I am working hard at going after Merck...pls share ur story on my podcast anchor.fm/lisa-destella3
I've been in contact with them many times...were gonna try to get them
Hello. I’m Dennis from Dayton Ohio. My pain most days a 10. My allergy to nightshades has been discovered! I’m still fighting. But running out of fight
Hi Dennis, my pain is also a 10, pls share ur story on my podcast...ive been in contact with merck many times now...working on them the best i can anchor.fm/lisa-destella3
Wow I'm shocked to finally see so many with the same side effects from interferon that I have!! I was treated in '01 for 9mos! I did clear the virus, for which I am grateful and did get SSD when unable to work with memory problems, arthritis, depression. But it's been very difficult for anyone to understand...especially DOCTORS! Ty all to meet and hear from you! I dont get how to podcast
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.
Wow I'm shocked to finally see so many with the same side effects from interferon that I have!! I was treated in '01 for 9mos! I did clear the virus, for which I am grateful and did get SSD when unable to work with memory problems, arthritis, depression. But it's been very difficult for anyone to understand...especially DOCTORS! Ty all to meet and hear from you! I dont get how to podcast
Yes, and one more thing I wanted to add. So much for feeling better and going back to work. It sucks being on social security, I can barely afford to buy the vitamins that I know can help me. After working all the good jobs I had and then spending my remaining years broke really sucks. And then you have to go in Medicare, and I don’t know what state you live in but Washington is number 36 in caring for their patients on Medicare and Medicaid. No doctor wants to see you for they don’t get enough money, FIGURES! Do not trust any doctor anymore, and I won’t take their medicine.
Look them up on the sunshine act, did not go into effect until 2014. It will tell you how much doctor’s are getting from big pharma.
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I developed fibromyalgia, RA,still in constant pain,eyes are going,I see flashes in peripheral vision at night, hip impingment,shoulders giving out, anger and rage. Big pharma poisoned me plain and simple,dr who prescribed Pegysus to me retired never told me of the severity of this poison. Neuropsychiatric damage.
There needs to be penalties for the greed of big pharma!
I took Prednisone burst to figure out fibro pain from osteo pain. Widespread pain from fibro subsided osteo didnt. Backwards.
Lotta stress in every area of my life right now. Will be selling some gold for computer. There is a much better website for you to inform about your podcast than this. Hopefully, it still exists. Will let you know soon.
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1 ReactionHello. I’m Dennis from Dayton Ohio. My pain most days a 10. My allergy to nightshades has been discovered! I’m still fighting. But running out of fight
I am working hard at going after Merck...pls share ur story on my podcast anchor.fm/lisa-destella3
I've been in contact with them many times...were gonna try to get them
-
Like -
Helpful -
Hug
1 ReactionHi Dennis, my pain is also a 10, pls share ur story on my podcast...ive been in contact with merck many times now...working on them the best i can anchor.fm/lisa-destella3
Wow I'm shocked to finally see so many with the same side effects from interferon that I have!! I was treated in '01 for 9mos! I did clear the virus, for which I am grateful and did get SSD when unable to work with memory problems, arthritis, depression. But it's been very difficult for anyone to understand...especially DOCTORS! Ty all to meet and hear from you! I dont get how to podcast
-
Like -
Helpful -
Hug
1 ReactionHello 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.
Yes, and one more thing I wanted to add. So much for feeling better and going back to work. It sucks being on social security, I can barely afford to buy the vitamins that I know can help me. After working all the good jobs I had and then spending my remaining years broke really sucks. And then you have to go in Medicare, and I don’t know what state you live in but Washington is number 36 in caring for their patients on Medicare and Medicaid. No doctor wants to see you for they don’t get enough money, FIGURES! Do not trust any doctor anymore, and I won’t take their medicine.
Look them up on the sunshine act, did not go into effect until 2014. It will tell you how much doctor’s are getting from big pharma.