Long term side effects of interferon

[Melvil]

Dear all,

My wife was treated for her HCV in 2001 with interferon plus ribavirin. She was like a guinea pig and now, 8 years after, she is living with side effects that have never gone : hypotension (around 8), fainding every day, unbearable headaches, kidney pyelonephritis every months, and an exhausting fatigue that keep her in her bed sometimes several days, where she can hardly eat alone. Before that, she was so full of life, making car races, flying planes, being a model for photographes, and photographer herself. All the physicians and experts that she met told her that it was impossible to be due to the Interferon treatment, but before the treatment, all went well. She is so exhausted that she can't fight no more against medical community in order to admit the origin of her symptoms and to push them to try to find a beginnning of solution.
Is there any progress in the comprehension of the cause of these symptoms ? Are there some new treatments that appeared recently to counteract exhaustion and pains ? Do people group themselves in associations to better fight against this disaster ? Would you have some testimonies, books or adresses to advice us in order to be updated in the comprehension of these sides effects and their potential treatments ?
Any information will really be of great help,
With my best regards.

[flcyclist]

"You are probably right!!!  I do need to get off the soapbox!!  I think I have said enough about after-effects...but I guess part of my motivation lately was the number of people posting about their long term issues, then I get caught up in the whole issue, and then there I go again!!   I will take a Chill Pill....thanks for pointing out my overkill.............

Also, my recent flare up of sx may have motivated me to jump into the shark tank again.  I will just observe for awhile!!!  Too much energy typing these posts anyway..takes away from my time with my business.....

Happy Holidays!!!!!   DoubleDose, going keyboard-free."

DD, apparently the Chill Pill you took isn't working.  Could you "Double the Dose"?    Seriously, you've been relentless in your agenda to point out the evil effects of interferon and your overkill of this sole agenda is overwhelming several threads.   As we try to be optimistic, you are trying to spread a message of fear and pessimism.  Your perception has unfortunately become your reality.  

[frespirit57]

I'am really sorry i took this stuff my life has been a mess since. it seems as time gos on it just gets worst, i'am homless now, when i started that treatment i had a good job, money saved, i was gt1 stage2 on the liver, enzines were high, so, i was told to take this treatment, now, i hurt my shoulders when i came off the tx, i had 2 shoulder surgerys on my r-shoulder, the 2 surgery paralized my diaphram, now i have a lung on 1 side, i feel sick all the time head presser nasal- fu like symtums, for over a 1yr presser on the chest, nobody seems to find anything, i could think pretty fast add numbers in my head quick, now my brain is blank i don't know where to start or stop, does anyone ever come out of this in a positive light, why did i have to do so much damage to get reed of this hep c, and could i have waited ? frespirit57    

[frespirit57]

i have fu like symtums3yrs ater treatment, does this ever end

[Frank J. Perrotta]

"...and got me kicked off SS Disability, (which I fought long and hard for), because I am now "cured" on paper. Really? I could at least hold a job before the treatment, and now there is nothing that I can do even PT, that can sustain me financially that I am capable of and I have no disability for back up! I actually go tomorrow for yet another appeal hearing..."

I do wish you luck in your battles.

I was so very lucky to have found a team of docs in this small town who not only believed me, my complaints and where they would all stem from but also an assistant in filing for disability.

I made sure that we filed my disability as coming from treatment as I was "cured". The first judge wrote up the most absurd decision - with all my disabilities listed for why I couldnt work and then turning me down for disability. My assistant was just shocked by it all.

Then I became one of those 1%ers who had that decision from a judge overturned and seen by a second judge. WHAT A DIFFERENCE!!! He actually was human and seemed concerned. Even said something about "Good riddance" to the first judge (who had retired) ON TAPE!!!

If you can get yourself admitted to the MAYO I have heard that they label us as suffering from PIS (Post-Interferon Syndrome) and maybe that would help to get you back on disability.

Again,
Best of luck with it all

[jerialice]

My sister died from melanoma and i was going thru tx about the time we got her into md anderson for tx. After i saw what they gave her, i had a hard time complaining. But i still felt awful after two weeks of the meds..
she was getting 100x the amount of INF/per dose more that what we take and all in about a 4 month period + other nasty mainline drips. Even had she survived, the drugs and radiation changed her radically. We did our tx together for a while until i got to where i could not drive. BTW it was my second time on Pega/Riba.
I had horrific sx to the tx and ended up in the ER a couple of times. I had so many probs and the doc kept telling me people were going to work and so on! That sure didn't help!!
I am not sure if the issues i am still having are post tx or hep c related since both times after being UND i relapsed. Talk about demoralizing, eh? I do know the tinnitus is from the meds and brain fog is my constant friend. I did notice that before i started tx though and they are now saying the the virus gets in teh brain etc, so who knows?
Someone on here does good spread sheets, maybe the post tx follow up would be a good project for us all to put some thought and energy into. I'd love some data to help put this in perspective.
I'd help if we do.
Jerialice

[jerialice]

yes the longest.... makes ya wonder.