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Jan 8, 2019 · Post Interferon Syndrome in Infectious Diseases

Are there any other boards or forums that you all are a part of or is this the only one that discusses post interferon treatment? Just curious since this is the only place I’ve found. Thx!

Jan 8, 2019 · Post Interferon Syndrome in Infectious Diseases

@elgosta as am I. 15 years post treatment & suffering every single day with zero help from any doctor bc none will believe that all my symptoms are connected. Believe me, I could care less ab being HCV free.

Jan 6, 2019 · Post Interferon Syndrome in Infectious Diseases

Same here! Was just being sarcastic. Over 15 years clear, 37 years old, 4 kids & thank God still married to the same man for 18 yrs. My first injection was actually the night before our wedding. My youth was for sure taken away from me. I’m just glad to finally know that I’m not alone & not going crazy…like most doctors make me feel!!!

Jan 6, 2019 · Post Interferon Syndrome in Infectious Diseases

These findings are during treatment & the other one is only 3 months post- treatment.

Jan 6, 2019 · Post Interferon Syndrome in Infectious Diseases

@jwbeenie I have been told by my dr (that I did the treatment through) that there just aren’t enough studies behind the long-term effects of the medication/ medications since it’s still so newly approved. Which he said is why people like myself & others need to make sure they let their doctors know exactly what’s going on & all of the symptoms they’re having. It’s really all we can do at this point.
Certain combinations can cause different long term side effects, he did confirm that. And that if said side-effects haven’t come back or returned to normal within 5 yrs of treatment then, it most likely won’t. But hey, cheers to being HCV free! 🙄

Nov 1, 2018 · Post Interferon Syndrome in Infectious Diseases

Thank you so much for this! @Idestella
I appreciate it more than you know. 18 years post-treatment, not one doctor has said they believe all my symptoms are linked to treatment but I know they are. Just one more thing to make ya feel crazy!

Nov 1, 2018 · Post Interferon Syndrome in Infectious Diseases

@johnwhitfield

I’m in the same boat. 18 years later, 37 years old & I feel like I am a complete mess! Have you had any help from any of your doctors?

Oct 29, 2018 · Post Interferon Syndrome in Infectious Diseases

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.