Connect
← Return to Post Interferon Syndrome
Discussion
Comment receiving replies
I find it absolutely crazy that NONE of my doctors know anything about this or there hasn’t been enough studies done on it. 18 year’s ago I was involved in a study for Hep C drugs. 18 years ago I was 20 years old & had the liver of a 65 year old alcoholic so this study was a miracle for me to find & then be included in. I did so many different medications over the course of 2 years, I can’t even tell you what all I took. What I can tell you is that, 18 yrs later I get lost driving to my mothers house or taking my kids somewhere we’ve been multiple times. I can’t remember much & forget a lot more than I should, on a daily basis. I’ve been a stay at home mom for 14 yrs, which was an easy way to “hide” everything...plus “mommy brain” has always been a huge excuse. Then I was given Adderall & I did so good, it was a different world, but only for about 3 years. Now my dr won’t increase my dose & I’m stuck “all over the place.” Besides the fog & memory issues, math has become increasingly hard. My body aches, my joints hurt, my hair has turned 98% grey & I can’t lose weight to save my life! I feel so much older than 37. I wish there was more information on the long term effects of interferon on your brain/ body. I am convinced it’s what has destroyed me. I’ve cleared the virus for over 15 yrs now but the way I feel on a daily basis has me questioning if it was worth it.
Replies to "I find it absolutely crazy that NONE of my doctors know anything about this or there..."
What you have shared helps me understand my life and frustrations and disappointments. Everything sounds similar. How many of us are out there? The vague "fibromyalgia " diagnosis is an insult to our intelligence. Our diagnosis should be post interferon syndrome. It should be recognized and acknowledged for its debilitating effects and pharmaceuticals need to take responsibility for it.
Thought you might like to know that I had interferon more or less foisted on me in 2005. Unlike you, I didnt have any signs of hepatitis at all but was (accidentally) discovered to be HCV+. I have never had symptoms of hepatitis, have a good healthy liver in fact. Even so, I have exactly the symptoms you describe, plus a few more.
I thought you might like a second opinion that it was the interferon did this, not your liver. Considering the interferon treatment was known to be ineffective there is no way the balance of risks excuses the way it was foisted on everyone. I was told I would have liver cancer within 2 years if I didnt consent. An absolute load of cobblers in my case.
Anyway best of luck. Let someone else do the cooking.
Connect
Hi!!! please review this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3394469/ there are many more articles saying this exact same thing. we are not nuts. i have tried several lawyers but no one will touch it!!! PLEASE EVERYONE...THERE IS A FDA WEBSITE WHERE U CAN TURN THESE DRUGS IN. I DID MONDAY. THIS WOULD BE ONE WAY TO GET NOTICED. Everyday is a battle for me to even get thru a day. my immune system is GONE...i have CVID from these treatments. I HAVE TO HAVE INFUSIONS THE REST OF MY LIFE. I am just starting my 35th antibiotics in 2 yrs. I have Sjogren's syndrome (autoimmune), bad stomach probs, massive pain in my joints, and the fatigue is overwhelming. I am a RN and also have a master's public health. can't work or even function hardly. i went to my grocery store that i go to at least 3x week and got lost inside, got more confused than usual. we need help so so bad