I deal with life by doing lots of meditation. I also use ice for pain. I was on a long acting pain medication, but new government regulations regarding pain meds made it so that i can no longer be on that. My life has gone from bad to worse without that medication. I am not giving up hope that I will improve, or get back to at least the level of functioning i was at while on heavier pain meds. I wish the pharmaceutical companies would admit to long term side effects post interferon. There are plenty of us out here suffering. I had genotype 3A. I wish i would have known that new treatments were on the horizon back in 2009 when I took the Pega interferon treatment for six months of hell. I do not have the virus detected in my blood anymore. I am barely able to leave the house anymore, however, and developed my symptoms of pain and fatigue shortly after finishing the treatment. I am and have been chronically ill for over 8 years. I am not getting better at this point, but have gotten worse. The long term side effects of post interferon syndrome have devastated my life. I do my best to remain hopeful, and grateful for whatever i can.
Best,
Krista
I went through Interferon and Ribavirin treatment 23 years ago. It made me sicker than hell but, I toughed it out. Upon finishing, I told my Gastroenterologist that something is not right. My head was in a fog. I suffered from pain everywhere, I just ache. Perpetual nausea that no one has an answer for. Chronic fatigue on an almost daily basis. I went from working 100hr. weeks, to not being capable of holding a regular job. Doctors have no answer. I’m now 67 years old, this treatment destroyed my life.
It feels so great to read all of your comments. I live in The Netherlands. I took Rebif/Interferon for about 11 years and have been off it since 2012. And I'm still getting better. I took it bevause I have M.S. It ruined my liver, kidneys and teeth. They have all recovered, but the fatigue and especially the mental issues such as depression, anxiety are still there. I knew it hade to be because of Interferon but no-one in the medical field believed me. They still don't. And now to read I'm not the only one and it actually has an name is so great. I wasn't nuts, I was right. Like I said, I'm still getting better but it is scary to realise I'll never know the extent of the damage done to me. I wish you all love and would like to hear from you.
25 years ago I underwent 3 back to back courses of interferon (Intron Alpha 2a) treatment for Hep C stage 2, with no impact on viral load whatsoever. Spending quality time at Ground Zero after the 9-11 attacks did not help, progressing to stage 4/Cirrhosis and being placed on the transplant list. Fast forward to 2004 when I received my liver transplant and post transplant also undergoing a course of Pegasys in 2005 which did work and have been virus free since. Since then and over the years getting more pronounced, I have suffered continuously from body aches, chronic fatigue and the inability to focus, affecting one of the things I enjoy most; reading. With little effort I have torn a calf muscle, have had rotator cuff surgery on my right shoulder, my left one signaling it’s on the same track. I have cervical spine and lumbar spine degenerative issues. Sharp pain in both feet is a daily occurrence. “Tennis elbow” on both elbows is a chronic issue with no apparent cause , for any of it.
I eat well and have led a relatively active lifestyle in spite of the aches and pains but it’s become more difficult every day due to pain and mobility issues. I suspect the degenerative aspects my issues share are directly related to interferon, specifically Intron Apha 2a. Several doctors I’ve spoken to about this have stated “there may be something to this” but offered nothing beyond that. This far out from treatment and transplant, I wonder if anyone else has had a similar experience and continues to suffer any if not all of these post treatment issues.
Hi, I was on the trial triple therapy for hep C included interferon - ribavirin, boceprevir and telaprevir from July 2012 to June 2013. Was a bit of a struggle during that year but the biggest issue has been the years after. I gave up work a couple years later due to severe depression which kept me in bed for around 6 months (I was already on anti depression drugs before the trial). Fatigue has not stopped, I often now become anxious, get rashes at the slightest brush on a plant, and have become a a big fan of juicy fruit due to a feeling of dryness rather than thirst. My weight has finally stabilised at 45kg, no matter what I eat, can not but on weight. When I contacted the doctor who treated me for information on any long term effects he has noticed, they told me I was off the trial because i did not attend the final appointment, which is not correct.
I am 62 and did the 56 week
Ribavirin and interferon treatment 25 years ago ....while having success with the help c I've been suffering for years. Multiple snowballs medication allergies. The Blanket DX of fibromyalgia IBS C and D. Depression Nicosia Fungoides SUDDS chronic pain This year was my stomach .....couldn't eat for months became Failure to Thrive lost weight my hair my quality of life With Drs treating well masking symptoms with no answers. Please help im.so alone
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It feels so great to read all of your comments. I live in The Netherlands. I took Rebif/Interferon for about 11 years and have been off it since 2012. And I'm still getting better. I took it bevause I have M.S. It ruined my liver, kidneys and teeth. They have all recovered, but the fatigue and especially the mental issues such as depression, anxiety are still there. I knew it hade to be because of Interferon but no-one in the medical field believed me. They still don't. And now to read I'm not the only one and it actually has an name is so great. I wasn't nuts, I was right. Like I said, I'm still getting better but it is scary to realise I'll never know the extent of the damage done to me. I wish you all love and would like to hear from you.
25 years ago I underwent 3 back to back courses of interferon (Intron Alpha 2a) treatment for Hep C stage 2, with no impact on viral load whatsoever. Spending quality time at Ground Zero after the 9-11 attacks did not help, progressing to stage 4/Cirrhosis and being placed on the transplant list. Fast forward to 2004 when I received my liver transplant and post transplant also undergoing a course of Pegasys in 2005 which did work and have been virus free since. Since then and over the years getting more pronounced, I have suffered continuously from body aches, chronic fatigue and the inability to focus, affecting one of the things I enjoy most; reading. With little effort I have torn a calf muscle, have had rotator cuff surgery on my right shoulder, my left one signaling it’s on the same track. I have cervical spine and lumbar spine degenerative issues. Sharp pain in both feet is a daily occurrence. “Tennis elbow” on both elbows is a chronic issue with no apparent cause , for any of it.
I eat well and have led a relatively active lifestyle in spite of the aches and pains but it’s become more difficult every day due to pain and mobility issues. I suspect the degenerative aspects my issues share are directly related to interferon, specifically Intron Apha 2a. Several doctors I’ve spoken to about this have stated “there may be something to this” but offered nothing beyond that. This far out from treatment and transplant, I wonder if anyone else has had a similar experience and continues to suffer any if not all of these post treatment issues.
Hi, I was on the trial triple therapy for hep C included interferon - ribavirin, boceprevir and telaprevir from July 2012 to June 2013. Was a bit of a struggle during that year but the biggest issue has been the years after. I gave up work a couple years later due to severe depression which kept me in bed for around 6 months (I was already on anti depression drugs before the trial). Fatigue has not stopped, I often now become anxious, get rashes at the slightest brush on a plant, and have become a a big fan of juicy fruit due to a feeling of dryness rather than thirst. My weight has finally stabilised at 45kg, no matter what I eat, can not but on weight. When I contacted the doctor who treated me for information on any long term effects he has noticed, they told me I was off the trial because i did not attend the final appointment, which is not correct.
I am 62 and did the 56 week
Ribavirin and interferon treatment 25 years ago ....while having success with the help c I've been suffering for years. Multiple snowballs medication allergies. The Blanket DX of fibromyalgia IBS C and D. Depression Nicosia Fungoides SUDDS chronic pain This year was my stomach .....couldn't eat for months became Failure to Thrive lost weight my hair my quality of life With Drs treating well masking symptoms with no answers. Please help im.so alone