Post Interferon Syndrome

Just found this...I was treated in 2006 for Hep C at the Miami VA hospital....1st was i interferon/Ribavirin 48 week treatment....3 months later...viral load was high...can’t remember...really high...within a year...new drug, Bocepriver spelling? they did another 48 week treatment ....I was very hesitant...no...no more. I was told my biopsy showed my liver in 3rd stage...it’s a must...the new drug was specific to people who were geno type 4....me!
That was hell....I am now 66...female...do the math...brain fog.

After that treatment they said I was cured....I was thankful it was over and Hep C gone...
It started subtle...I would tell my husband...Don’t feel right....I used to workout ...really active...instead of feeling the burn at the gym...it felt like a flu feeling....
Tired all the time...something was off...I questioned the new drug...boceprever...sorry, I know I’m spelling it wrong.

My husband was diagnosed terminal cancer in 2017...
10 months later he passed...😢 In it all...I was a nightmare...couldn’t handle anything...
I assumed it was all related to his illness ...so sick...his death...and of course it was! It was horrible.

After ...I was a mess...assuming...Who wouldn’t be?
In Jan 2019..my sister came...she said your dying...I lived in bed...couldn’t function...
With her insistence...I ended up at Dr
I live I Fl...I thought people must think I’m a druggie...all wrapped up..cold...always crying..light sensitive...sunglasses...always was thin...but booked anorexic....
Filling new patient was a big deal..
I did put treatments down...
Dr saw me...immediately questioned me about treatments...looking confused almost...They did 2 48 wk treatments basically back to back...
I was apologizing for my appearance..sunglasses..my eyes...wrapped up...
Thought she would assume I did drugs...

Btw..it was an Endocrinologist...always has thyroid issues....told my sister...my levels are off.

The Dr. took me into ultrasound room...I was so happy to lay down,..and it was dark...
She’s talking to young gal ....thyroid is gone or something like that..I thought she was talking about another patient..
No, it was me...

Hard to explain or remember detail...but, was confused.

She was so kind and really pissed that they gave me basically 2 yrs of this poison.

Here I am..May 2021...same Dr. ...can’t get levels right...She gets it...but can’t fix it.

Now, I feel like a recluse...mentally...forget it...I’m like an invalid....and any type of excursion...I’m down for days....

I have 3 beautiful grandchildren....3 sons...their wife’s ...truly blessed...
I cry all the time...I’m missing out n so much..They worry about me...So I become more isolated to protect them.
I can’t ...the normal trying to help...
Eat better..get out more...be more positive....
I’ve tried ...I can’t...I dot want them to worry....

I can’t...I don’t take pain meds like I’ve read on some of your posts....it’s not pain..it’s flu feeling...short of breath...

I found this...searching for treatment of thyroid due to interferon.
So, I hear ya.
It’s a very dark state of mind...I admitted to my Dr...I can’t live like this...she knows well enough now...my personal beliefs....I won’t hurt myself...not to say thoughts haven’t been there.
But, I ask God to take me...I’m done..I’m tired of being so physically and mentally messed up.
I know isolation has made it worse...mentally...but, it so hard...I don’t want my family to worry and it’s hard to fake...
I’m not a pot smoker..but, I will or have if ..like Xmas...at least a temporary mask. Unfortunately, the pot physically makes me more tired after it wears off...and more depressed...
So, very rare...it’s a bandaid.

Ok..I’m done...going to add pic...taken not long before my husband was diagnosed....I think it was Easter 2017...his hospitalization was the following July 2017.
💕🙏💕🙏💕

Hello. I’m Dennis from Dayton Ohio. My pain most days a 10. My allergy to nightshades has been discovered! I’m still fighting. But running out of fight

I guess I just never looked but I'm astounded to see all of the responses to PIS. I'm 33, was born 3 months premature in '88 and got a contaminated HBV transfusion. I took interferon in 2nd grade(1997?) it didn't work and I had all of the side effects.

Fast forward I got the covid vaccine and had my 2nd shot 4/19/2021. Before that I was showing symptoms of PsA but after the shot my symptoms (bruising, joint pain, hair loss, concentration, etc increased). Currently testing to see why.

Most of the symptoms over the last 20+ years I just chalked up to HBV but I see there's probably a greater pink to PIS. One of my friends moms got cancer after her interferon treatments and had severe autoimmune issues. She was the first one to explain what PIS was. Rip MJ.

Hello @meavfe and welcome to Mayo Clinic Connect. You have shared a tremendous history of struggle. You mentioned that you never got any help getting over that experience. Have you ever contemplated seeking some help to do so now?

Lisa,
I do my best to keep my spirits up, even though i am in a very similar situation. I have a genuis IQ, which i never usually say, but saying it now because i can barely think straight half the time. I have terrible brain fog and memory problems. I was diagnosed with chronic fatigue syndrome and fibromyalgia, but also told these symptoms are a result of the interferon. Gastrointestinal problems and eyesight problems are also related to post interferon. I have been researching for years and would give anything to have not taken interferon. We are not alone. People all over the world are suffering similar long term side effects.
I cant undo what has already happened. All i can do is manage my symptoms as best i can and be grateful things are not even worse. No, it is not fair. Yes, there should be a lawsuit we could join. YES, they should be trying to figure out treatments to help those of us suffering years after treatment. Know that you are not alone. Ill keep you in my thoughts.
Krista

Hi.thats horrendous what u have endured ave been know where near that much suffering you have had to endure, but I have lived wife the longterm side effects of interferon and I have had chronic pain mood swings depression brain fog memory loss and I have been on and of painkillers for years , only last week I decided to give C.B.D a try its the none addictive extract from the cannabis plant its sold over the counter in my health shop , I have noticed a massive change in one week I feel alot more relaxed and happy for the first time in years the pain in my kneck and hip its none existing , if its a placebo effect them so be it this last week has been like a miracle

I recently posted on another forum but had no responses except for 1 person that told me I might try here instead.
I also had interpheron-ribavirin treatment for hep c and stage 4 cirrhosis 10 yrs ago. Happy to say the horrendous 48 week self injection treatment worked, and I did also as advised by my gastroenterologist, did not touch a drop of alcohol for 8yrs. Had all the horrible side effects as the majority of us did as well, and the brain fog, memory and droppsies stuck around for a long time. Thought I was on my way to a fairly normal life after those 8 yrs....was in great shape physically and mentally.....enter Covid and then the vaccine. 5 days after the Phizer vaccine I was hit like a ton of bricks with headaches, body aches, brain fog, dizziness, shortness of breath, blurry vision, back aches and fatigue so bad I could barely get up and go to work. I thought I had Covid so I went for a test and it was negative...so that's great, I've just got the flu then....but it never went away...for over 3 months. My family dr sent me in May for every blood test, back x-rays, ultrasounds on my abdomen and everything was perfect...I was healthy as a horse she said, except I had a high white blood count in my urine. She said I had a bladder infection. I told her I have no symptoms of that and reminded her of all the other symptoms I do have. There is something really wrong with me. I feel horrible everyday!
My husband asked me one day, when I was having a meltdown, what does it feel like, what is your worse symptom!
I said all of it..it feels like I'm on treatment again. Bam...I wondered if that's what it is? When on my last visit to my dr, I asked if it could have something to do with my treatment of interpheron-ribivirin 10 yrs ago....it is an antiviral treatment, Covid is a virus and they still to this day do not know the reprocussions or long term effects of the Interpheron-ribivirin concoction on a human being. She had no idea but said it very well could be possible and after speaking to 3 pharmacists, they all had the same answer. It definitely could be from the vaccine and your prior treatment. Your body thinks it's being attacked again and the antiviral could be still kicking around...they didn't know... As they have never had any reports on any trials or outcomes or side effects from the Interpheron-ribivirin and the vaccine. So here I am, just hoping someone else out there knows what I am going through and they have had the same type of problems post vaccine. I sometimes do think I am crazy and I do cry a lot because others have no idea how devastating this has been. I am not getting the second shot until I have some type of answers. I don't go out in public much anyway, just to get groceries etc, and always wearing a mask in public. I am self employed as a bookkeeper so can work from home for the most part and am from a small town in Ontario Canada. So if you have had similar side effects or know of someone else, please get in touch with me. It would be good to know I am not alone. Thanks! Stay well.