Wow! I am so excited to find this blog… sorry for the reason but people who actually understand.
1983 - diagnosed non A non B hepatitis
2001 - tested positive Hep C (it had a name)
2001 - type 1B, million per m/l, liver biopsy periportal fibrosis 2.5/4
2001 - August joined clinical trial,
ribovirin and pegalated interferon
2001 - October, removed from trial because I felt like I was losing my mind and wanted to die
2002 - gastroenteritis said I had 5-10 years to live
2002-2003 - 48 weeks of shots and my “insecticide” pills.
2002 - again 8 weeks gonna lose it. Started anti-psychotics, opioids, Xanax, Cymbalta, Lyrica, thyroid meds,
2003 - to present
Tinnitus, Fibromyalgia, white matter in my brain, Osteoarthritis facet joints c2-s1, hypthyroid, insomnia, allergies, tortuous redundant sigmoid colon (from horrible constipation from 15 years), body temp dips to 95 to 97.2 (have not had a fever since 2001)
INSOMNIA IS DANGEROUS! Help don’t know where to turn.
Wow! I am so excited to find this blog… sorry for the reason but people who actually understand.
1983 - diagnosed non A non B hepatitis
2001 - tested positive Hep C (it had a name)
2001 - type 1B, million per m/l, liver biopsy periportal fibrosis 2.5/4
2001 - August joined clinical trial,
ribovirin and pegalated interferon
2001 - October, removed from trial because I felt like I was losing my mind and wanted to die
2002 - gastroenteritis said I had 5-10 years to live
2002-2003 - 48 weeks of shots and my “insecticide” pills.
2002 - again 8 weeks gonna lose it. Started anti-psychotics, opioids, Xanax, Cymbalta, Lyrica, thyroid meds,
2003 - to present
Tinnitus, Fibromyalgia, white matter in my brain, Osteoarthritis facet joints c2-s1, hypthyroid, insomnia, allergies, tortuous redundant sigmoid colon (from horrible constipation from 15 years), body temp dips to 95 to 97.2 (have not had a fever since 2001)
INSOMNIA IS DANGEROUS! Help don’t know where to turn.
I am so sorry to hear about what’s going on with you. The side effects or post interferon syndrome manifests itself in many different ways. They keep adding to the list of side effects. I was diagnosed in 1975 with non A and B By 2007 I was at stage 3-4 cirrhosis and started on the interferon and ribovan. I had all the side effects including Alopecia. I’m virus free after the treatment and most side effects except the alopecia had gone away. Fast forward ten years and all the side effects came back with a vengeance. Autoimmune symptom and lupus issues, fatigue, brain fog and more. These symptoms have similarity but again manifest themselves differently for each person. Lots of luck to you
Rob
I did the interferon and ribavirin combination therapy in 2007-2008. I did the shots once a week in addition to the pills every day for 11 months. This was recommended as I had the worst genotype with a viral load in the millions. The treatments did work and I have been undetectable since 2007 (during the treatment) with no recurrence of the hep c. Over the years I have developed a lot of medical issues that I just recently put together as possibly being caused by the the interferon and ribavirin. Chronic fatigue, muscle and joint pain in numerous parts of my body (but primarily in hips, legs, back and neck), memory loss, I have trouble staying organized where before the treatment I was obsessively organized, low grade headaches, vision problems (vasculitis, retinal hemorrhage and a stroke in one eye resulting in vision loss, floaters in both eyes, etc), sleep apnea, high blood pressure, thyroid issues, gastroparesis, and a brain tumor/lesion. Additionally, I am constantly sick with sore throat, laryngitis, ear infections, colds, flu and pneumonia (and yes I get the flu, covid and pnuemonia vaccines).....it seems like I have a very poor immune system and catch every "bug" coming and going. I have had many doctors over the years and have been tested for everything imaginable to determine what could be causing some of these issues but nothing has been determined. I know my doctors all think I am a hypochondriac but these symptoms are very real. Does any of this sound like post interferon syndrome? The link provided seems more for symptoms of recent treatments rather than for people that did the treatment a long time ago.
I'm not sure if anybody ever actually gets diagnosed with post interferon syndrome or not. I know that it sounds like u should be able to be diagnosed with it but getting a doctor to say so seems like only a dream
Please help me I did 56 week treatment 16 years ago ribravin and interferon for hep C. I am 60 year old woman and struggle with depression chronic fatigue joint pain chronic utis . IBS just whole body pain and I seem to catch every virus
I'm not sure if anybody ever actually gets diagnosed with post interferon syndrome or not. I know that it sounds like u should be able to be diagnosed with it but getting a doctor to say so seems like only a dream
I was diagnosed with post interferon syndrome by my liver consultant in 2012, five years post treatment. Chronic fatigue and joint and muscle pains, neuropathy, adhd traits, vision problems, brain fog and concentration problems, muscle spasms. For five years he told me it wasn’t the drugs, then it was.
I'm not sure if anybody ever actually gets diagnosed with post interferon syndrome or not. I know that it sounds like u should be able to be diagnosed with it but getting a doctor to say so seems like only a dream
I am pretty much ignored when I mention all the lasting effects of those medicines, like I’m a hypochondriac. I no longer try to get help either, for help does not exist. Those drugs changed me forever in a negative way, but no one cares and no one wants to hear it. They could never ever understand unless they were to take the drugs for a year, once a week shots, etc. etc. I could go on and on here.
Good question, @mrhaney. The combination of interferon and ribavirin is now no longer used as safer, shorter highly effective and more tolerable tablet only treatments are now available. For example, newer treatments called direct-acting antivirals (DAAs) are now the standard of care for treating hepatitis C. This is largely because they’ve been shown to be more effective than interferons and to cause fewer side effects.
But if you’ve taken interferons in the past, you might still be seeking information on the side effects that may occur due to long-term hepatitis C treatment with interferons.
Talk with your doctor. They can tell you if symptoms you’re experiencing may be linked with previous treatment with interferons and if you have post interferon syndrome. They can also offer ways to help ease your symptoms.
Have you seen a Reheumatologost. Have you had auto immune system checked. I was at stage 3-4 cirioss and took the interpheron and ribivan in 2007. I was cured. In 2017 all the symptoms associated with the treatments came back. The symptoms come and go now. I think it's a matter of piecing together all your symptoms and blood work. Good luck
Rob
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Wow! I am so excited to find this blog… sorry for the reason but people who actually understand.
1983 - diagnosed non A non B hepatitis
2001 - tested positive Hep C (it had a name)
2001 - type 1B, million per m/l, liver biopsy periportal fibrosis 2.5/4
2001 - August joined clinical trial,
ribovirin and pegalated interferon
2001 - October, removed from trial because I felt like I was losing my mind and wanted to die
2002 - gastroenteritis said I had 5-10 years to live
2002-2003 - 48 weeks of shots and my “insecticide” pills.
2002 - again 8 weeks gonna lose it. Started anti-psychotics, opioids, Xanax, Cymbalta, Lyrica, thyroid meds,
2003 - to present
Tinnitus, Fibromyalgia, white matter in my brain, Osteoarthritis facet joints c2-s1, hypthyroid, insomnia, allergies, tortuous redundant sigmoid colon (from horrible constipation from 15 years), body temp dips to 95 to 97.2 (have not had a fever since 2001)
INSOMNIA IS DANGEROUS! Help don’t know where to turn.
I am so sorry to hear about what’s going on with you. The side effects or post interferon syndrome manifests itself in many different ways. They keep adding to the list of side effects. I was diagnosed in 1975 with non A and B By 2007 I was at stage 3-4 cirrhosis and started on the interferon and ribovan. I had all the side effects including Alopecia. I’m virus free after the treatment and most side effects except the alopecia had gone away. Fast forward ten years and all the side effects came back with a vengeance. Autoimmune symptom and lupus issues, fatigue, brain fog and more. These symptoms have similarity but again manifest themselves differently for each person. Lots of luck to you
Rob
I'm not sure if anybody ever actually gets diagnosed with post interferon syndrome or not. I know that it sounds like u should be able to be diagnosed with it but getting a doctor to say so seems like only a dream
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1 ReactionPlease help me I did 56 week treatment 16 years ago ribravin and interferon for hep C. I am 60 year old woman and struggle with depression chronic fatigue joint pain chronic utis . IBS just whole body pain and I seem to catch every virus
I was diagnosed with post interferon syndrome by my liver consultant in 2012, five years post treatment. Chronic fatigue and joint and muscle pains, neuropathy, adhd traits, vision problems, brain fog and concentration problems, muscle spasms. For five years he told me it wasn’t the drugs, then it was.
I’m so glad I foun
I am pretty much ignored when I mention all the lasting effects of those medicines, like I’m a hypochondriac. I no longer try to get help either, for help does not exist. Those drugs changed me forever in a negative way, but no one cares and no one wants to hear it. They could never ever understand unless they were to take the drugs for a year, once a week shots, etc. etc. I could go on and on here.
Have you seen a Reheumatologost. Have you had auto immune system checked. I was at stage 3-4 cirioss and took the interpheron and ribivan in 2007. I was cured. In 2017 all the symptoms associated with the treatments came back. The symptoms come and go now. I think it's a matter of piecing together all your symptoms and blood work. Good luck
Rob