Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

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@robbyd

My heart goes out to you. My symptons started about 10years after treatment. I kept going to the doctor for symptons. Go for a bunch of tests where they found nothing. Eventually the symptoms went away but the severe symptons keep coming back. Yes always tired always spacey. enjoy the good days. It was a relief to find this forum. I understand more of whats happening to my body and we are not crazy. Knowing it's real has helped me alot in dealing with post interfereon syndrome. Best luck to you

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Glad u found us! Ya, a lot of us r really bad with no quality of life! Feel free to ask questions!
Lisa

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Having some of the same symptoms of the long term use of the Ribavirin and Interferon. Sometimes feel overwhelmed with mental and physical issues. Still expected to produce at work and not miss time, which is a struggle. Not many understand what you are dealing with. Lots of pain and mood swings. Haven't had much help from Doctors I've seen. Was treated in 2011 for 14 months, with the Hepc returning 3 months after treatment. Was treated again in 2016 with the Harvoni treatment which cured the Hep c but am still struggling with the side effects of the 1st go around. What can be done to help? Thanks

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@jenglereckedbin

I'm sorry to hear that. This is not admitted o the media. Hep C virus can sometimes remain undetected especially in damaged parts of the liver so I have read in extensive research. I hope you will overcome the hep c with better treatments

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I was diagnosed in 2002 with Hep C which was most likely contacted when I had a blood transfusion in 1979 due to complications with pregnancy had hemorrhaging and hysterectomy c section baby was a bit premature but fine She never contacted Hep C anyway , I was treated with interferon and ribavirin Ithought it was something called rebuttal? I was on treatment fo 7 months and taken off due to low platelets and other side effects but they said my viral load was very low and virtually undetectable so after all these years I thought I was cured a few years ago I was having digestive issues and eye problems but just thought it was age related I was diagnosed with venous Insufficiency Disease had a Stasis ulcer which was infected now healed My Dr. Did some Liver tests and checked for Hep C IT IS BACK. I WAS EXCITED ABOUT THE ULCER BEING HEALED AND GOING TO VASULAR SURGEON TO TREAT VEINS TO PTEVENT FUTURE ULCERS NOW THE HEPC AGAIN DID A BIT OF RESEARCH AND I AM THINKING MAYBE HEPC HAD SOMETHING TO DO WITH MY VASCULAR ULCER ANYONE KNOW? ALSO I HAVE NO IDEA WHERE TO GO AFTER SO LONG WHAT TREATMENTS ARE AVAILABLE THAT INTERFERON I HAD IN 2002 WAS BRUTAL EXPENSIVE EVEN THEN AND DID NOT WORK ANY INPUT WOULD BE SOOOO APPRECIATED

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@caminoman

Having some of the same symptoms of the long term use of the Ribavirin and Interferon. Sometimes feel overwhelmed with mental and physical issues. Still expected to produce at work and not miss time, which is a struggle. Not many understand what you are dealing with. Lots of pain and mood swings. Haven't had much help from Doctors I've seen. Was treated in 2011 for 14 months, with the Hepc returning 3 months after treatment. Was treated again in 2016 with the Harvoni treatment which cured the Hep c but am still struggling with the side effects of the 1st go around. What can be done to help? Thanks

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I really admire You for Not giving up I am glad that The Harvoni worked but has left there mark I do not think people that are fortunate enough not to have Heo C realize the toll it takes

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May Your Health get better with each passing day!!!!

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@victimofinterferon

I to have been dealing with this for 8 yrs and the sad thing is, the doctors are covering for each other. The pharmacist industry is a very filthy rich business. The government doesn't care what happens to the people. FDA is the biggest joke, there is. NO help for us victims. I can't even get proper diagnosis. My feet flair up, making it Impossible to walk and I have been living on government assistance and can't even get disability for my problems. I don't care about a government, that doesn't care about us. I to, wish I was dead.

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I agree I was treated in 2002 in pegiterferon rebvarin for 7 months the side effects were grueling and felt like I got hit by a Mack Truck within a month my eyes were effected blurred vision ( I never had eye problems prior to that ) I started to get muscle pain in hips and lowerback( was told by Dr it was Arthritus and Fibromyalgia that Al's ok contributed to my exhaustion Heck I was then only 52 very active prior my platelets got too low and was taken off of interferonan and told viral load was very low cured but the side effects continued and got worse now 20 years later I am recovering from Venous stasis ulcer from Venous Insufficiency Disease I developed spider and varicose veins while on Interferon treatment and now causing these ulcers on ankle Seeing Vascular Surgeon in a week to treat diseased veins and oh The Hepatitis C decided to come back But I have to say after others on hear have shared their stories I feel quite Blessed to not have more issues with my Health Thankyou everyone for sharing

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Big Pharma to the rescue Where do You turn when You have no Money ? Work your Butt off try to be a good law abiding taxpaying citizen and just be Healthy if You have Money You can Afford outrageous costs for medicines and care

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@deidre

Hi, I am new to this discussion. I actually just discovered by accident yesterday that other people questioned whether the interferon/ribavirin treatment left them with long-term side effects or total physiological changes in the body. I had the 6 month treatment in 2014-2015. I had been in pain in my upper right abdomen daily for 2 years, going to the hospital here, even telling them I was a recovering addict with Hep c and asked if it could be the problem. Told no way..I had only been infected about 7 years at the time and was told not long enough to do any damage. Finally I went back to my family doctor and was sent to the liver specialist here...and I had stage 3 grade 2 liver disease and needed immediate treatment. At that time the new treatment was in the works but was still at least 2 years from being in Canada and the specialist felt I did not have the time to wait. So I did the interferon and ribavirin for 6 months...It was horrible to say the least. I was off work for 8 months and returning to work was really hard for a long time. But it is years later and I still am constantly tired, brain fog, vision loss began shortly after and has continued to worsen. I had perfect vision prior to...god, I could go on and on!!! I can't explain how relieved I am to see I am not alone and not crazy!

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Same here I started having vision problems within a month and developed Vascular problems headaches 29 years later I am here with same issues and Hep C is back

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@sueleerock

I did a year of treatment in 2008. I have had numerous side effects the worse one being the treatment damaged my bones, it is painful even to walk, my knees are now cracking which is a symptom I need to see a doctor for. I have proof, from my research, that the treatment does massive damage to your bones. Does anyone else have this symptom? It is awful to not have pain relief because of the opiate crisis.

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Treated for 14 months with the Hep c returning months later. Having a lot of the same issues. Haven't had much luck getting any relief. It does go to your head because it hard for others to understand what you are going through. Not sure why we can't get some kind of legal action against the Pharmaceutical companies. They explained the side effects during the treatment but I never was told there would life long side effects. I don't want to say it's ruined my life but it's definitely made it much harder. Feel like I've lost ten years of it. You're not alone.

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I'm about 10-12yrs post treatment. I'd be more exact but my brain can't process time in a linear way so determining years is too hard. Brain fog and fatigue which I was told was from HCV got worse after treatment. Now I'm full adhd space case, my autopilot doesn't work anymore, I can't drive safely because I forget to remember to pay attention. I developed dyslexia like symptoms in my thoughts but I'm also dyslexic with movements. I don't know how to explain it. I used to be a dancer and now when mu chiro tells me what position to go in I get so confused that I panic and he has to place my limbs where they go. After second dose moderna (I was a hepc/hiv support worker for youth who did medical transport and counselling) I convulsed all night and developed tics that haven't gone away. My nervous system got spiked. Everything that was in there got amplified (asd/ocd/panic disorder symptoms, fear and shame responses, pain from sound/sight/smell/other sensory, rigidity, pain tolerance is non existent, physical nervous system responses are so strong and constant)

I'm wondering if my childhood experiences with infectious diseases; ocular herpes type virus, necrotizing faciitis, pneumonia, lung infections, many blood infections of cellulitis and things like that, hep c, etc. Coupled with my heavy medication history; pegasys interferon ribivirn, and whatever i got in hospital, has caused my gulf war illness type symptoms/early onset alzeimers mixed with chronic fatigue, fibromyalgia, RA symptoms and hand deformity without anything showing in blood work, thyroid disorder symptoms with no supporting blood work.

Logs of cancer, thyroid deficiency, RA, myalgia in my family already.

I just want a moment to enjoy my 30s but I can even take care of myself. I think k j messed up my disability cuz I got super confused about paperwork and can't go into the office because my social and agoraphobia are pushing at me.

I was a professional and now this is how I talk.

Has Anybody else seen a heavy increase in neurological responses since vaccine or covid?

Is my body just ravaged by all the chemicals that there's nothing left to salvage? I'm 35 and can't handle thinking about the future knowing that humans bodies don't get better the older u get.

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