Not that it helps you, but I've gone through the exact issues and happen to mirror your timeline with Interferon and Ribavirin. My Rheumatologist has heard of this problem, but had no answers for the pain and fatigue that I've had for the last 5 years. Absolute torture!
Hi-I’m so very sorry that u r going thru this also!! There r probably over a million of us suffering 🤬
Regarding ur bone pain. I am fixing to have my 7th surgery on my bones, interferon destroyed my collagen, the matrix that makes EVERYTHING in the body…bone, skin, nails, organs, etc the pain is overwhelming! It also destroyed my immune system n ive been on over 165 antibiotics in 61/2 yrs n get lifetime infusion’s of antibodies! This just barely touches all the other issues 🤬 I encourage u to get with me as I was a practicing RN with a master’s degree but way to sick now but I’m sure I can help u or at least answer some questions for u xo
I am 10 years post tx and barely have a life. I had 4 years (trials) attempting to clear hep c the 4th year using the current drug (which cleared me) on the market. The first 3 years (attempt/fails) included interferon, ribavirin and an experimental drug. Needless to say, like the others posting here, I have slowly been affected by post interferon side effects until now...where I barely exist every day. I have chronic Epstein Barr as of approximately 8 years ago and have contributed my condition to it. My Osteopath recently ordered an ANA test and I was positive (dictating past exposure to interferon). I don't really know where I go from here. I have spent 10's of 1000's on medical chasing this. I feel for everybody on here...I am living the nightmare myself. Existing is about all I do so fatigued with other weird symptoms daily. Hoping a Rheumatologist might have some answers.
Hi-so sorry that ur going thru all of this also! I found that no doctor has helped me over the yrs because for one thing, they have no clue about this medication…no one except a GI doc knows n they wont accept the dx of post interferon syndrome…pls contact me as Im sure that I can help u n answer some questions xo
Hi-I’m so very sorry that u r going thru this also!! There r probably over a million of us suffering 🤬
Regarding ur bone pain. I am fixing to have my 7th surgery on my bones, interferon destroyed my collagen, the matrix that makes EVERYTHING in the body…bone, skin, nails, organs, etc the pain is overwhelming! It also destroyed my immune system n ive been on over 165 antibiotics in 61/2 yrs n get lifetime infusion’s of antibodies! This just barely touches all the other issues 🤬 I encourage u to get with me as I was a practicing RN with a master’s degree but way to sick now but I’m sure I can help u or at least answer some questions for u xo
That would mean so much to me to have questions answered I think it's the fact I've struggled with this over 13 years with no real answers knowing that I'm not alone in this gives me comfort
I am 10 years post tx and barely have a life. I had 4 years (trials) attempting to clear hep c the 4th year using the current drug (which cleared me) on the market. The first 3 years (attempt/fails) included interferon, ribavirin and an experimental drug. Needless to say, like the others posting here, I have slowly been affected by post interferon side effects until now...where I barely exist every day. I have chronic Epstein Barr as of approximately 8 years ago and have contributed my condition to it. My Osteopath recently ordered an ANA test and I was positive (dictating past exposure to interferon). I don't really know where I go from here. I have spent 10's of 1000's on medical chasing this. I feel for everybody on here...I am living the nightmare myself. Existing is about all I do so fatigued with other weird symptoms daily. Hoping a Rheumatologist might have some answers.
I was on 2 Hep C treatments back in early 2000. Each involved interferon and ribavirin.
The interferon was different each time. My viral load was the target of each treatment since I had a rare genotype
3 of Hep C. Doctor said it would not likely cure me but it will reduce the viral load. They gave me a liver transplant in fall of 2000. I did haveva short treatment of just interferon prior to my transplant in the summer of 2000. The 2 other followed post transplant. I had no lingering side affects that I was made aware of. Then in early 2014/2015 the newer medicines came out for Hep C and I tried 2 treatments with 2
different medications. Finally in early 2016 there was a negitive viral load. By this time I was so sick again that the doctors performed my 2nd liver transplant in summer 2017. Since then no Hep C and the transplant has done well.
I do recall my 3 interferon treatments, 2 with ribavirin. The ribavirin made me real sick both times. I had to work from home since I could hardly walk around, I shook all over, had joint pain, vomited a lot, I felt spacy. My blood cell counts were real low so I was injecting both red and white blood cell
treatments daily. After treatments, after a couple months I felt OK.
This was living hell since I worked in IT and was a database tech guy at work. I needed a clear head and energy to sit and work on 3 terminals at my desk and 2 at home sometimes up to 24 hours during emergencies and large project installations.
I was on 2 Hep C treatments back in early 2000. Each involved interferon and ribavirin.
The interferon was different each time. My viral load was the target of each treatment since I had a rare genotype
3 of Hep C. Doctor said it would not likely cure me but it will reduce the viral load. They gave me a liver transplant in fall of 2000. I did haveva short treatment of just interferon prior to my transplant in the summer of 2000. The 2 other followed post transplant. I had no lingering side affects that I was made aware of. Then in early 2014/2015 the newer medicines came out for Hep C and I tried 2 treatments with 2
different medications. Finally in early 2016 there was a negitive viral load. By this time I was so sick again that the doctors performed my 2nd liver transplant in summer 2017. Since then no Hep C and the transplant has done well.
I do recall my 3 interferon treatments, 2 with ribavirin. The ribavirin made me real sick both times. I had to work from home since I could hardly walk around, I shook all over, had joint pain, vomited a lot, I felt spacy. My blood cell counts were real low so I was injecting both red and white blood cell
treatments daily. After treatments, after a couple months I felt OK.
This was living hell since I worked in IT and was a database tech guy at work. I needed a clear head and energy to sit and work on 3 terminals at my desk and 2 at home sometimes up to 24 hours during emergencies and large project installations.
I'm sorry for all your suffering. that is a lot to handle. I was part of the experimental trials in 2012/13 for the new med that has a 90?% cure rate. I did get cured. I do have serious mystery issues that keep me grounded now. Chronic EBV and Autonomic Dysfunction 🙁
Hello. I did the interferon/ribavarin treatment back around 2000. Nobody had a clue what they were doing yet, except for a wonderful nurse that worked for interferon, I believe. Hadn't been for her, I might have died. Plus I got a towel, hahaha. Now I am beginning to feel the mental side effects at 64.
I'm sorry for all your suffering. that is a lot to handle. I was part of the experimental trials in 2012/13 for the new med that has a 90?% cure rate. I did get cured. I do have serious mystery issues that keep me grounded now. Chronic EBV and Autonomic Dysfunction 🙁
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Same here I'm having the same problem
Hi-I’m so very sorry that u r going thru this also!! There r probably over a million of us suffering 🤬
Regarding ur bone pain. I am fixing to have my 7th surgery on my bones, interferon destroyed my collagen, the matrix that makes EVERYTHING in the body…bone, skin, nails, organs, etc the pain is overwhelming! It also destroyed my immune system n ive been on over 165 antibiotics in 61/2 yrs n get lifetime infusion’s of antibodies! This just barely touches all the other issues 🤬 I encourage u to get with me as I was a practicing RN with a master’s degree but way to sick now but I’m sure I can help u or at least answer some questions for u xo
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1 ReactionHi-so sorry that ur going thru all of this also! I found that no doctor has helped me over the yrs because for one thing, they have no clue about this medication…no one except a GI doc knows n they wont accept the dx of post interferon syndrome…pls contact me as Im sure that I can help u n answer some questions xo
That would mean so much to me to have questions answered I think it's the fact I've struggled with this over 13 years with no real answers knowing that I'm not alone in this gives me comfort
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2 Reactions859-304-1974
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3 ReactionsI was on 2 Hep C treatments back in early 2000. Each involved interferon and ribavirin.
The interferon was different each time. My viral load was the target of each treatment since I had a rare genotype
3 of Hep C. Doctor said it would not likely cure me but it will reduce the viral load. They gave me a liver transplant in fall of 2000. I did haveva short treatment of just interferon prior to my transplant in the summer of 2000. The 2 other followed post transplant. I had no lingering side affects that I was made aware of. Then in early 2014/2015 the newer medicines came out for Hep C and I tried 2 treatments with 2
different medications. Finally in early 2016 there was a negitive viral load. By this time I was so sick again that the doctors performed my 2nd liver transplant in summer 2017. Since then no Hep C and the transplant has done well.
I do recall my 3 interferon treatments, 2 with ribavirin. The ribavirin made me real sick both times. I had to work from home since I could hardly walk around, I shook all over, had joint pain, vomited a lot, I felt spacy. My blood cell counts were real low so I was injecting both red and white blood cell
treatments daily. After treatments, after a couple months I felt OK.
This was living hell since I worked in IT and was a database tech guy at work. I needed a clear head and energy to sit and work on 3 terminals at my desk and 2 at home sometimes up to 24 hours during emergencies and large project installations.
I'm sorry for all your suffering. that is a lot to handle. I was part of the experimental trials in 2012/13 for the new med that has a 90?% cure rate. I did get cured. I do have serious mystery issues that keep me grounded now. Chronic EBV and Autonomic Dysfunction 🙁
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Like -
Helpful -
Hug
1 ReactionHello. I did the interferon/ribavarin treatment back around 2000. Nobody had a clue what they were doing yet, except for a wonderful nurse that worked for interferon, I believe. Hadn't been for her, I might have died. Plus I got a towel, hahaha. Now I am beginning to feel the mental side effects at 64.
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1 ReactionIs this your number to contact u
I know exactly how you feel I'm suffering from their treatments