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 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.
We understand, unfortunately the Medical community does not. It helps to understand our symptoms are real. You go through all the side effects while you’re on it and 10 years later they come back.
Agree. If we do not complain and keep it to ourselves, how is anyone going to know what we are going through! It’s so darn painful. Some days I wish I could die but that’s not my call, it’s my Creators! The last ten years have gotten so bad. The constant pain, I cry myself to sleep but only sleep for a couple hours at a time. I went the full 48-weeks/eleven month of doing my own subcutaneous injections every Wednesday with nine Ribavarin pills daily. I now deal with thyroid issues, constant muscle and joint pain, migraines, insomnia and now I’m dealing with my bowels and bladder quit working properly. Oh, and because of our COLA raise for social security, I got dropped from Medicaid. Rent went up fifty dollars, auto insurance also went up twenty two dollars….i got cut from food stamps, down to $36/month, our raise was forty five dollars. So, what the heck do we do now that we are old and hurting?
Aaron. Melbourne Australia.
Mental health worker (until recently).
Treated in the early 2000s as part of a clinical trial.
Treatment: Interferon & Ribrivirin.
Restless leg syndrome and reduced blood flow to fingers, sleep disturbances, and a decline in mental health began after treatment. I did not even think about the treatment as a cause, and over the years, mental health declined. No history of family baldness, but I have thin hair. Began having trouble with swallowing and with my left knee.
Gradual decline until recently.
My knee became worse with no explanation. It became hard to handle the cold.
General aches and pains, insomnia, nausea, fever, extreme chills, muscle degeneration, muscle tension thyroid issues, immune symptom dysfunction, they all hit a year ago.
I have an apt with the Rheumatoid clinic at the same hospital that provided the treatment.
Doctors tend to treat symptoms individually, and can't connect all the dots.
Blood levels not too far out of whack, but a multitude of systematic issues that when you do connect the dots, suggest post-interferon syndrome.
Initial investigation into my issues led me to Lupus, Fibromyalgia, and Myositis.
It seems that the combination of interferon and ribavirin creates significant systematic failures, complex mental health issues, and a decrease in cognitive functionality.
The cure is worse than the disease.
I am looking into the legal side of things, but meeting a lot of resistance.
I meet a lot of resistance medically also.
Although the past is long behind me, and I have tried to function as an average person in society, unconscious bias, and stigma have led to delayed medical investigation.
Finally, I will have some issues investigated, and a muscle biopsy will be tested, but now I have learned from this post that bone marrow density should also be tested.
From my perspective, there are two areas to investigate legally.
The physical impact and the mental health and wellness impact.
I guess the way to have people take us all seriously is to make a lot of noise.
Of course, the bias and stigma may prevent people from making such noise.
Not sure what to do at this stage, apt with a specialist is 26 days away.
I think I'll have to be prepared to present a case to the specialist in order for these complications be be addressed and assessed appropriately.
I guess we'll see.
Any advice would be greatly appreciated.
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.
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!
I went through the Pegasus treatment for 48 months around 2004. White blood cells got real low and was extremely sick but made it till the end hep c free. Thyroid didn't work anymore and 3.5 years later I had 6 bypasses. I have had stints in my groin, legs, and several more in my heart since. Not to mention all of the GI issues, sinus infections and aches\pains for years. Then headaches vision numbness in face legs and body started 7 years ago before I passed out on a table. Thought I was having a stroke cause I couldn't talk, words were slurred, couldn't pick up glasses with hands. Docs couldn't find anything wrong but did find some abnormal in a brain scan. After that every thing changed. Can't remember stuff anymore, can't stay focused, have anxiety issues and depression. Had to quit working due to mental health and cognitive decline.
Started doing some research and am now wondering if the the treatment I went thru caused most of have been experiencing. I'm pretty sure it caused my thyroid issue. Then I discovered some old paperwork in a closet because we are downsizing that led me to believe that the six bypasses at 40were possibly caused by that treatment as well. Now I'm wondering if my cognitive issues and passing out on the table 6 years is just newest phase of side affects.
Aaron. Melbourne Australia.
Mental health worker (until recently).
Treated in the early 2000s as part of a clinical trial.
Treatment: Interferon & Ribrivirin.
Restless leg syndrome and reduced blood flow to fingers, sleep disturbances, and a decline in mental health began after treatment. I did not even think about the treatment as a cause, and over the years, mental health declined. No history of family baldness, but I have thin hair. Began having trouble with swallowing and with my left knee.
Gradual decline until recently.
My knee became worse with no explanation. It became hard to handle the cold.
General aches and pains, insomnia, nausea, fever, extreme chills, muscle degeneration, muscle tension thyroid issues, immune symptom dysfunction, they all hit a year ago.
I have an apt with the Rheumatoid clinic at the same hospital that provided the treatment.
Doctors tend to treat symptoms individually, and can't connect all the dots.
Blood levels not too far out of whack, but a multitude of systematic issues that when you do connect the dots, suggest post-interferon syndrome.
Initial investigation into my issues led me to Lupus, Fibromyalgia, and Myositis.
It seems that the combination of interferon and ribavirin creates significant systematic failures, complex mental health issues, and a decrease in cognitive functionality.
The cure is worse than the disease.
I am looking into the legal side of things, but meeting a lot of resistance.
I meet a lot of resistance medically also.
Although the past is long behind me, and I have tried to function as an average person in society, unconscious bias, and stigma have led to delayed medical investigation.
Finally, I will have some issues investigated, and a muscle biopsy will be tested, but now I have learned from this post that bone marrow density should also be tested.
From my perspective, there are two areas to investigate legally.
The physical impact and the mental health and wellness impact.
I guess the way to have people take us all seriously is to make a lot of noise.
Of course, the bias and stigma may prevent people from making such noise.
Not sure what to do at this stage, apt with a specialist is 26 days away.
I think I'll have to be prepared to present a case to the specialist in order for these complications be be addressed and assessed appropriately.
I guess we'll see.
Any advice would be greatly appreciated.
I think I did same treatment for 48 months. The shot and a bunch of pills 20 years ago. My thyroid quit working during the treatment and has never worked since. Thought it was from the hep c. Had 6 bypasses 3.5 later. Whole host of issues afterwards. 6 years ago head hit table at lunch and felt like I was having a stroke. They couldn't determine what happened so they called it a migraine. Started doing research on our treatment and discovered it might be from this treatment. Wish the docs would connect the dots. It's like each specialist only looks at their field and doesn't listen to me. Frustrating as he'll. But keep your head up. We made it through that damn treatment, we are survivors!
16 years after rib/int. Treatment my life is just getting worse Painful skin rashes joint pain depression headaches fog Who helps with this since treatment I have a laundry list of anaphylactic allergies to meds
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
I'm beyond beside myself cause I've been dealing with this since 2011 here we are 13 years later with a severe case of fibromyalgia I have lesions in my central nervous system I'm always in pain every day
16 years after rib/int. Treatment my life is just getting worse Painful skin rashes joint pain depression headaches fog Who helps with this since treatment I have a laundry list of anaphylactic allergies to meds
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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.
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2 ReactionsWe are not alone. Life is so tough. All this crying and frustration.
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3 ReactionsAgree. If we do not complain and keep it to ourselves, how is anyone going to know what we are going through! It’s so darn painful. Some days I wish I could die but that’s not my call, it’s my Creators! The last ten years have gotten so bad. The constant pain, I cry myself to sleep but only sleep for a couple hours at a time. I went the full 48-weeks/eleven month of doing my own subcutaneous injections every Wednesday with nine Ribavarin pills daily. I now deal with thyroid issues, constant muscle and joint pain, migraines, insomnia and now I’m dealing with my bowels and bladder quit working properly. Oh, and because of our COLA raise for social security, I got dropped from Medicaid. Rent went up fifty dollars, auto insurance also went up twenty two dollars….i got cut from food stamps, down to $36/month, our raise was forty five dollars. So, what the heck do we do now that we are old and hurting?
-
Like -
Helpful -
Hug
1 ReactionAaron. Melbourne Australia.
Mental health worker (until recently).
Treated in the early 2000s as part of a clinical trial.
Treatment: Interferon & Ribrivirin.
Restless leg syndrome and reduced blood flow to fingers, sleep disturbances, and a decline in mental health began after treatment. I did not even think about the treatment as a cause, and over the years, mental health declined. No history of family baldness, but I have thin hair. Began having trouble with swallowing and with my left knee.
Gradual decline until recently.
My knee became worse with no explanation. It became hard to handle the cold.
General aches and pains, insomnia, nausea, fever, extreme chills, muscle degeneration, muscle tension thyroid issues, immune symptom dysfunction, they all hit a year ago.
I have an apt with the Rheumatoid clinic at the same hospital that provided the treatment.
Doctors tend to treat symptoms individually, and can't connect all the dots.
Blood levels not too far out of whack, but a multitude of systematic issues that when you do connect the dots, suggest post-interferon syndrome.
Initial investigation into my issues led me to Lupus, Fibromyalgia, and Myositis.
It seems that the combination of interferon and ribavirin creates significant systematic failures, complex mental health issues, and a decrease in cognitive functionality.
The cure is worse than the disease.
I am looking into the legal side of things, but meeting a lot of resistance.
I meet a lot of resistance medically also.
Although the past is long behind me, and I have tried to function as an average person in society, unconscious bias, and stigma have led to delayed medical investigation.
Finally, I will have some issues investigated, and a muscle biopsy will be tested, but now I have learned from this post that bone marrow density should also be tested.
From my perspective, there are two areas to investigate legally.
The physical impact and the mental health and wellness impact.
I guess the way to have people take us all seriously is to make a lot of noise.
Of course, the bias and stigma may prevent people from making such noise.
Not sure what to do at this stage, apt with a specialist is 26 days away.
I think I'll have to be prepared to present a case to the specialist in order for these complications be be addressed and assessed appropriately.
I guess we'll see.
Any advice would be greatly appreciated.
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!
-
Like -
Helpful -
Hug
1 ReactionI went through the Pegasus treatment for 48 months around 2004. White blood cells got real low and was extremely sick but made it till the end hep c free. Thyroid didn't work anymore and 3.5 years later I had 6 bypasses. I have had stints in my groin, legs, and several more in my heart since. Not to mention all of the GI issues, sinus infections and aches\pains for years. Then headaches vision numbness in face legs and body started 7 years ago before I passed out on a table. Thought I was having a stroke cause I couldn't talk, words were slurred, couldn't pick up glasses with hands. Docs couldn't find anything wrong but did find some abnormal in a brain scan. After that every thing changed. Can't remember stuff anymore, can't stay focused, have anxiety issues and depression. Had to quit working due to mental health and cognitive decline.
Started doing some research and am now wondering if the the treatment I went thru caused most of have been experiencing. I'm pretty sure it caused my thyroid issue. Then I discovered some old paperwork in a closet because we are downsizing that led me to believe that the six bypasses at 40were possibly caused by that treatment as well. Now I'm wondering if my cognitive issues and passing out on the table 6 years is just newest phase of side affects.
-
Like -
Helpful -
Hug
1 ReactionI think I did same treatment for 48 months. The shot and a bunch of pills 20 years ago. My thyroid quit working during the treatment and has never worked since. Thought it was from the hep c. Had 6 bypasses 3.5 later. Whole host of issues afterwards. 6 years ago head hit table at lunch and felt like I was having a stroke. They couldn't determine what happened so they called it a migraine. Started doing research on our treatment and discovered it might be from this treatment. Wish the docs would connect the dots. It's like each specialist only looks at their field and doesn't listen to me. Frustrating as he'll. But keep your head up. We made it through that damn treatment, we are survivors!
-
Like -
Helpful -
Hug
1 Reaction16 years after rib/int. Treatment my life is just getting worse Painful skin rashes joint pain depression headaches fog Who helps with this since treatment I have a laundry list of anaphylactic allergies to meds
-
Like -
Helpful -
Hug
1 ReactionI'm beyond beside myself cause I've been dealing with this since 2011 here we are 13 years later with a severe case of fibromyalgia I have lesions in my central nervous system I'm always in pain every day
I'm currently suffering from the same thing