The problem is, speaking about the problems that interferon has caused all of us, goes this far and that's it, on this website and no further. Just a problem, that will never be heard. If someone pushes the message into the real world and gets recognition, please let me know. Good luck, ain't gonna happen. So, I'm curious, Mayo clinic, why don't you step up for us and be a real voice for us, just curious. Your move.
The problem is, speaking about the problems that interferon has caused all of us, goes this far and that's it, on this website and no further. Just a problem, that will never be heard. If someone pushes the message into the real world and gets recognition, please let me know. Good luck, ain't gonna happen. So, I'm curious, Mayo clinic, why don't you step up for us and be a real voice for us, just curious. Your move.
You're right @victimofinterferon, this discussion forum is a space to meet others who are living with the same health condition or issue, to give and get support. To add your voice to groups of people who are bringing this issue forward to governments and policy makers, you may wish to search for Post Interferon Syndrome or Hep C advocacy websites and/or class action lawsuits.
Hi, I am new to this discussion. I actually just discovered by accident yesterday that other people questioned whether the interferon/ribavirin treatment left them with long-term side effects or total physiological changes in the body. I had the 6 month treatment in 2014-2015. I had been in pain in my upper right abdomen daily for 2 years, going to the hospital here, even telling them I was a recovering addict with Hep c and asked if it could be the problem. Told no way..I had only been infected about 7 years at the time and was told not long enough to do any damage. Finally I went back to my family doctor and was sent to the liver specialist here...and I had stage 3 grade 2 liver disease and needed immediate treatment. At that time the new treatment was in the works but was still at least 2 years from being in Canada and the specialist felt I did not have the time to wait. So I did the interferon and ribavirin for 6 months...It was horrible to say the least. I was off work for 8 months and returning to work was really hard for a long time. But it is years later and I still am constantly tired, brain fog, vision loss began shortly after and has continued to worsen. I had perfect vision prior to...god, I could go on and on!!! I can't explain how relieved I am to see I am not alone and not crazy!
I too was told that I could not wait after 2 biopsies, I was one step away from death, or so they said. It is hard to look but and trust anything Ann C, the rn who treated me said. Her medical reports were anything but factual. She did not list all the ways that the drug was affecting me, the medical reports were full of untruths. There is so much I'd like to say, but it is extremely hard to type on this small phone. This treatment damaged my eyesight to the point that if my head is ever jerked hard my eye will become detached. I also have a cataract. They love saying it was caused from aging. But... It happened during treatment. The very worse part is previous to treatment my doctor told me I had the bones of a 20 yr. Old. I was 5'10", always took csre of myself and took mega vitamins. I now can barely walk and was told I need knee replacement surgery on my left knee, the same knee that was affected by the treatment. My sister, who is older, doesn't have any of the problems I do. Doctor's should never be given a financial incentive to push medicine. I tried to sue, too late. The most alarming was when I found and read the va's manual for treating physicians. All of us should have been given a bone density test throughout the entire treatment, because it is known to damage your bones, get your bones I should say, it is also known to cause extreme damage to your eyesight and every organ in your body. Finding this manual was a very eye opening shocker. They should have lowered my dose. I was on the highest dose they could give. But of course they never did any of this for they would have received less money. I no longer trust any doctor and I won't ever take their medicine again. Talk about corruption. I can never get back to be feeling good again for it hasn't happened. Every day it feels like I have an elephant sitting in my legs. I can't walk without terrible pain and I can't get a pain pill. I could tell you so much more.
It frys your bones is what I meant to say, I have proof of that also. I would like AR and AC to be forced to take the same medicine for a year as their punishment for ending so many lives. That would be an ideal punishment for them both.
Hi, my name is Deidre, I am new to this site but when I read what you said to Lisa it really hit home. I have all the same issues, chronic fatigue, vision issues, stomach issues, memory problems and now I am having balance issues and dropping things all the time. I have asked repeatedly (my doctor) if it could be the treatment and he says no, doubt it. He is a great doctor, has been wonderful to me but I live in PEI, Canada where not much happens, especially not research on medications. I have already said but I will say it again..the relief I feel seeing that I am not crazy is overwhelming. Thanks, Deidre
I too was dropping things all the time, that comes and goes. I believe the medicine may have done nerve damage too. I shrunk 3 inches on that medicine. No kidding!!!!!!!!!!! I continually asked the nurse why my legs were hurting so bad throughout treatment, now I know why, it was actually frying my leg bones. Creepy thought. The pain was severe. And the pain is with me each and every day and I was treated in 2008. I had a good life before interferon, walked everywhere, now it is too painful to walk anywhere.
Thank you so much for the validation. What kind of doctor diagnosed you? My general practitioner never mentioned it, my hepatologist isn't in the picture since I was cleared, and the doctors addressing my pain just say I need more exercise 🙁
I apologize for the late return. For some reason I didn´t see the notification of your message... I was initially diagnosed by an Infectious disease doctor. I know others with symptoms of fibromyalgia have had successful diagnostics done by rheumatologists. Dr. Kendal Stewart in Austin TX, who was very helpful, calls himself a Neurotologist / Neuroimmune / Genomic Specialist! When first pursuing specialist I did extensive internet research. There are a couple noteworthy centers dedicated to the research and treatment of ME/CFS. Dr. Nancy Klimas who is very sympathetic to our plight has an institution in Florida. Dr. Lucinda Bateman runs a center in Utah. I recommend taking advantage of the Health Rising website to further your search.
I too was dropping things all the time, that comes and goes. I believe the medicine may have done nerve damage too. I shrunk 3 inches on that medicine. No kidding!!!!!!!!!!! I continually asked the nurse why my legs were hurting so bad throughout treatment, now I know why, it was actually frying my leg bones. Creepy thought. The pain was severe. And the pain is with me each and every day and I was treated in 2008. I had a good life before interferon, walked everywhere, now it is too painful to walk anywhere.
Hi, thanks for replying to my post. I am in the process of my doctor trying to figure out why I am having so many neurological symptoms that have been getting worse over the last few years. Ironically, the doctor discovered I had low b-12 but apparently not low enough to be symptomatic, then they found a cyst in the left frontal cortex of my brain but it is supposed to be asymptomatic as well!! Then what is cause my symptoms!!!! When everything first started, I was told I would be fine once treatment ended! I also get told constantly that it is just getting old!!!! Before the treatment I had perfect vision, I was active and rarely had pain in my body. Since then I can barely walk when I first get up from either sitting or laying down. Luckily, I can still walk ok after I work out the stiffness, but even my gait has changed. I realized the treatment caused long-term issues because I had so many behaviors permanently change after. It sounds strange but I never slept on my back until the treatment, I always slept on my stomach and that changed. Also the foods I liked changed completely, I now eat certain foods that I never ate and don't eat ones that I loved! If the treatment can force a change in my physiology than I am sure it is capable of doing lots of other damage. When I try to talk about to anyone else they just think I am being over dramatic. I turn 50 this summer coming but most of the time I feel like I am very old!
Hi, thanks for replying to my post. I am in the process of my doctor trying to figure out why I am having so many neurological symptoms that have been getting worse over the last few years. Ironically, the doctor discovered I had low b-12 but apparently not low enough to be symptomatic, then they found a cyst in the left frontal cortex of my brain but it is supposed to be asymptomatic as well!! Then what is cause my symptoms!!!! When everything first started, I was told I would be fine once treatment ended! I also get told constantly that it is just getting old!!!! Before the treatment I had perfect vision, I was active and rarely had pain in my body. Since then I can barely walk when I first get up from either sitting or laying down. Luckily, I can still walk ok after I work out the stiffness, but even my gait has changed. I realized the treatment caused long-term issues because I had so many behaviors permanently change after. It sounds strange but I never slept on my back until the treatment, I always slept on my stomach and that changed. Also the foods I liked changed completely, I now eat certain foods that I never ate and don't eat ones that I loved! If the treatment can force a change in my physiology than I am sure it is capable of doing lots of other damage. When I try to talk about to anyone else they just think I am being over dramatic. I turn 50 this summer coming but most of the time I feel like I am very old!
The main damage is to the brain, everything else follows. I have an elephant sitting on my legs every day. Previous to treatment I enjoyed a good life and felt good. I only wish I would not have trusted them and delayed treatment. Isn’t it funny that now they tell me I no longer have cirrhosis, and everything is back to normal. They don’t have to deal with me now. If that is true why do I have liver hands. The medicine did a lot of nerve damage or I would not have an elephant sitting on my legs. The older you get the more they will love telling you it is from old age. I take vitamins only, rarely do I go to a doctor. The only ones I trust now are naturopaths.
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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The problem is, speaking about the problems that interferon has caused all of us, goes this far and that's it, on this website and no further. Just a problem, that will never be heard. If someone pushes the message into the real world and gets recognition, please let me know. Good luck, ain't gonna happen. So, I'm curious, Mayo clinic, why don't you step up for us and be a real voice for us, just curious. Your move.
You're right @victimofinterferon, this discussion forum is a space to meet others who are living with the same health condition or issue, to give and get support. To add your voice to groups of people who are bringing this issue forward to governments and policy makers, you may wish to search for Post Interferon Syndrome or Hep C advocacy websites and/or class action lawsuits.
-
Like -
Helpful -
Hug
1 ReactionI too was told that I could not wait after 2 biopsies, I was one step away from death, or so they said. It is hard to look but and trust anything Ann C, the rn who treated me said. Her medical reports were anything but factual. She did not list all the ways that the drug was affecting me, the medical reports were full of untruths. There is so much I'd like to say, but it is extremely hard to type on this small phone. This treatment damaged my eyesight to the point that if my head is ever jerked hard my eye will become detached. I also have a cataract. They love saying it was caused from aging. But... It happened during treatment. The very worse part is previous to treatment my doctor told me I had the bones of a 20 yr. Old. I was 5'10", always took csre of myself and took mega vitamins. I now can barely walk and was told I need knee replacement surgery on my left knee, the same knee that was affected by the treatment. My sister, who is older, doesn't have any of the problems I do. Doctor's should never be given a financial incentive to push medicine. I tried to sue, too late. The most alarming was when I found and read the va's manual for treating physicians. All of us should have been given a bone density test throughout the entire treatment, because it is known to damage your bones, get your bones I should say, it is also known to cause extreme damage to your eyesight and every organ in your body. Finding this manual was a very eye opening shocker. They should have lowered my dose. I was on the highest dose they could give. But of course they never did any of this for they would have received less money. I no longer trust any doctor and I won't ever take their medicine again. Talk about corruption. I can never get back to be feeling good again for it hasn't happened. Every day it feels like I have an elephant sitting in my legs. I can't walk without terrible pain and I can't get a pain pill. I could tell you so much more.
It frys your bones is what I meant to say, I have proof of that also. I would like AR and AC to be forced to take the same medicine for a year as their punishment for ending so many lives. That would be an ideal punishment for them both.
I too was dropping things all the time, that comes and goes. I believe the medicine may have done nerve damage too. I shrunk 3 inches on that medicine. No kidding!!!!!!!!!!! I continually asked the nurse why my legs were hurting so bad throughout treatment, now I know why, it was actually frying my leg bones. Creepy thought. The pain was severe. And the pain is with me each and every day and I was treated in 2008. I had a good life before interferon, walked everywhere, now it is too painful to walk anywhere.
-
Like -
Helpful -
Hug
1 ReactionI apologize for the late return. For some reason I didn´t see the notification of your message... I was initially diagnosed by an Infectious disease doctor. I know others with symptoms of fibromyalgia have had successful diagnostics done by rheumatologists. Dr. Kendal Stewart in Austin TX, who was very helpful, calls himself a Neurotologist / Neuroimmune / Genomic Specialist! When first pursuing specialist I did extensive internet research. There are a couple noteworthy centers dedicated to the research and treatment of ME/CFS. Dr. Nancy Klimas who is very sympathetic to our plight has an institution in Florida. Dr. Lucinda Bateman runs a center in Utah. I recommend taking advantage of the Health Rising website to further your search.
Hi, thanks for replying to my post. I am in the process of my doctor trying to figure out why I am having so many neurological symptoms that have been getting worse over the last few years. Ironically, the doctor discovered I had low b-12 but apparently not low enough to be symptomatic, then they found a cyst in the left frontal cortex of my brain but it is supposed to be asymptomatic as well!! Then what is cause my symptoms!!!! When everything first started, I was told I would be fine once treatment ended! I also get told constantly that it is just getting old!!!! Before the treatment I had perfect vision, I was active and rarely had pain in my body. Since then I can barely walk when I first get up from either sitting or laying down. Luckily, I can still walk ok after I work out the stiffness, but even my gait has changed. I realized the treatment caused long-term issues because I had so many behaviors permanently change after. It sounds strange but I never slept on my back until the treatment, I always slept on my stomach and that changed. Also the foods I liked changed completely, I now eat certain foods that I never ate and don't eat ones that I loved! If the treatment can force a change in my physiology than I am sure it is capable of doing lots of other damage. When I try to talk about to anyone else they just think I am being over dramatic. I turn 50 this summer coming but most of the time I feel like I am very old!
The main damage is to the brain, everything else follows. I have an elephant sitting on my legs every day. Previous to treatment I enjoyed a good life and felt good. I only wish I would not have trusted them and delayed treatment. Isn’t it funny that now they tell me I no longer have cirrhosis, and everything is back to normal. They don’t have to deal with me now. If that is true why do I have liver hands. The medicine did a lot of nerve damage or I would not have an elephant sitting on my legs. The older you get the more they will love telling you it is from old age. I take vitamins only, rarely do I go to a doctor. The only ones I trust now are naturopaths.
My son has many symptoms of other. His life is very unhappy. Just found this and am hoping to find some hope
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