Post Interferon Syndrome

My name is Barbara... I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes... the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.

I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!

HELLO EVERYONE...SORRY I HAVEN'T BEEN ON HERE FOR A WHILE BUT HAD SURGERY AGAIN ON MY CRUMBLING BONES FROM INTERFERON THERAPY. WE R GOING AFTER MERCK PHARMA...ANYONE WITH ME? I HAVE BEEN IN CONTACT WITH THEM JERKS.
I HAVE A PODCAST NOW N EVERYONE PLS GET ON IT N SHARE YOUR STORY OF INTERFERON THERAPY N WHAT IT HAS DONE TO U.

MY PODCAST IS: ANCHOR.FMURL/LISA-DESTELLA 3

I stopped posting on this site because it wasn’t helpful.

I am going to another doctor who I trust. I have been unable to get the bone density test results, they no longer exist. This would prove it was the medicine that fried my bones. I am going to try and locate the doctor. I think she might remember me for I was 49 and she was astounded by the results, and stated “I don’t know what you’ve been doing but you have the bones of a 20 year old.

My understanding is that if you end up with debilitating, crippling results of medication statute don’t apply. And you can still file a lawsuit. Does anyone know about this issue?

I can’t do it, I don’t have a computer.

My bones r fried also, just had my second neck surgery n a third is close cuz the stee in the front l (5-steel fusion), second...2 months ago a triple laminectomy...had to remove 3 discs and ad steel rods n screws in back n now another. I have 3 cages lower back n 2-7 inch steel plates holding my left leg, so yes, it fried my bones n the pain is unbearable. My immune system is gone n just got off my 90th antibiotic in 5 yrs. I have a port in my chest where in get lifetime infusions. I have a podcast n am going after Merck...pls join me n tell ur story. Lisa

My bones r fried also, just had my second neck surgery n a third is close cuz the stee in the front l (5-steel fusion), second...2 months ago a triple laminectomy...had to remove 3 discs and ad steel rods n screws in back n now another. I have 3 cages lower back n 2-7 inch steel plates holding my left leg, so yes, it fried my bones n the pain is unbearable. My immune system is gone n just got off my 90th antibiotic in 5 yrs. I have a port in my chest where in get lifetime infusions. I have a podcast n am going after Merck...pls join me n tell ur story. Lisa

They have now convinced the hospitals to give interferon to people in the hospital suffering from covid. I was hoping we could warn the public of this somehow.

I received an email and remembered your name. Is this really happening?!
And didn’t we talk on the phone a long while back, having trouble with my memory.

I have contacted so many different agencies to get justice and I have been turned down.

It is so weird to hear from you because getting justice is always at the back of my mind.

I recently thought of getting a wheelchair and sitting outside with placards letting everyone know they are endangering their life by having Read as their doctor, and how she ruined my life.

I was told approximately six months ago that I have osteopenia and now they are telling me I need to have my left knee replaced. I am in so much pain every day, I can barely walk, and can’t even get a pain pill. My quality of life does not exist. This was the same knee that swelled up to twice it’s size from treatment.

Two years previous to treatment I had a bone density test and was told I had the bones of a twenty year old.

This is not from old age, I can prove it was from treatment. The anger I feel never goes away, especially after finding out that we were supposed to have a bone density test intermittently throughout those long grueling 12 months!