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How do I know if I have post interferon syndrome?
how do you get tested yo see if I have this also took Ribavirin
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how do you get tested yo see if I have this also took Ribavirin
Interested in more discussions like this? Go to the Infectious Diseases Support Group.
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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.
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1 ReactionI 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.
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1 ReactionHave 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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2 Reactions@sueleerocks I hope you’ll see this. I know you’re a stranger, but I care and I’ll listen because I live it. My Dr told me for years that the Interferon/Ribaviron treatment had nothing to do with all of my symptoms. I didn’t believe him, but what could I do? He was a good dr and tried a lot of things to help me. Tested me for many different things. Diagnosed me with Fibromyalgia, Chronic Fatigue, Rheumatoid, depression and more. Fast forward many years. PIS is now a known issue. He tells me this is the problem. But get this- he doesn’t remember ME telling HIM this years ago. Now he is retired and not a single health care professional that I deal with knows about PIS. Luckily my current drs are willing to listen and did a little research to at least understand what I am talking about. I’m more than happy to talk to anybody who deals with this a little more privately (if that is even an option on here?) As you all probably know, this is so long and involved. I also don’t want to give medical advice, just share what I personally have done.
@lisaz
Thank you, I am 70 now and very angry about what happened to my body in 2007, those drugs literally ruined my life. I cleared the virus in one month. When they saw what the drugs were doing to my bone marrow, they should have halved the dose. But we’re you aware doctors were receiving as high as six figures for every prescription written?!!!!!! If you run into an unscrupulous doctor like I did, you got screwed. I had my bone density checked just a few years before treatment and the doctor stated, “I don’t know what you’ve been doing, but you have the bones of a 20 year old!” Few years later on interferon I go from being 5’11” to 5’7”, my eyesight has deteriorated so much and I am afraid I might go blind. I have Sjogren’s from treatment and numerous issues. Thank you again for your response. I am angry as all hell!