Post Interferon Long Term Side Effects on other sites

[DoubleDose]

Here is a site that I stumbled across today while Googling long term interferon after effects.  I also found several other sites as well, also 'chocked' full of people detailing their horrible experiences after using interferon.  This sure supports what many of us have been saying and experiencing!!  It is quite disturbing to read additional accounts, some even worse than the experiences documented here on our forum.  Here is the link:  (you will have to copy and paste)

http://www.lawyersandsettlements.com/forum/viewtopic.php?t=10


I will bet that sometime soon we will be hearing about these issues in the media.  The sheer volume and severity of the problems will cause this to become an issue that will provoke national media attention....and with very good cause!!!  I just don't think we were really warned of these kinds of long term outcomes.  I know I wasn't.

DoubleDose

[OldLabRat]

I had to sign didn't have a choice my liver was a  3 and a  high VL
It's better than being dead but not much~

[DoubleDose]

first attempt was about 64 weeks, and was I clear at end, but relapsed, due to using low Ribavirin.  I was doing daily Alpha Inf. A, and switched over to Infergen, 15 mcg,daily, for the last two thirds of the 64 weeks, due to slow response from daily Inf. A.

Second round was weekly PegIntron, (2A) and used the full vial, and for my body weight this worked out to more than the weight adjusted minimums for the tx.  I also was on Ribavirin full dose, and Procrit for anemia.  Total of 72 weeks,the course recommended for relapsers, and for Type 1-B, and was clear from week 19 until ending tx.  Have remained negative for nearly ten years, which equates to 'cured', or eradicated.

My problem is that I see many of these issues getting slowly worse over time.  They began in earnest about three to four weeks after ending tx, and never went away.  For the first two or three weeks after ending tx, I felt absolutely fantastic, like when I was18 years old, and had no HCV..I had.energy, was happy, upbeat, sexually charged, everything was really great....and I thought Wow, this is a total CURE, beyond belief....and then the post-tx symptoms came on, more or less like a sledge hammer...one after another, and relentless.  I have heard others comment on thet 2-4 week window after tx, when there is a feeling of total health and well being, and then the same happened to them.  I was absolutely sure for months, and months that I had relapsed.  The tests all said SVR...over and over and over.  That's when I starter to realize that it was from the Interferon, not the virus...an began researching to see what others were experiencing  I have read many similar stories to mine, and they all fit the same sort of pattern.  That's my story!
DoubleDose

[flcyclist]

DD, you mentioned above that you already went through 2 trt attempts using interferon which led you to having your current health issues.  To help us understand better and help put things into perspective can you address a few questions please?  I'm sure you've mentioned this several times in the past, but unfortunately I don't recall your history.

Can you tell us how many total weeks you were on interferon during the 2 trts?  

Was this using the standard dose during the whole course of trt (180 mcg) ?

Was this using peginterferon alfa-2a or 2b?

Thanks in advance.  I do hope these issue resolve themselves in the future.

[can-do-man]

" So yes, it will be great to get interferon into the past, when newer and less lethal drugs are put in place that get a very high cure rate"

I hope your right that they will be less lethal, time will tell.

[Trish77]

You may be onto something there.  That maybe the markers of Lupus triggered by interferon are a bit different than what the Lupus markers usually are.  I saw an article written by a doctor about joint pains and triggers from chemotherapy and immune system issues and wrote to her.  She dismissed any possibility that the interferon could have triggered my joint pain issues.  I'm not trying to start a class action suit or anything, I want the same as you.  I want the medical community to acknowledge additional issues that are becoming known as interferon-triggered so that it can be addressed properly.  That doesn't mean I'm not happy I did treatment.  I just want people who have issues post-treatment to get proper care and acknowledgement instead of being brushed off as whiners and hypochondriacs.  

Good post on the big picture on interferon.  It IS what we have for now, isn't it and while it's a nasty outcome for some, it's what gives hope for many for a cure for now.  

Take care and hope you do find your answers eventually and your peace.

Trish

[nygirl7]

No I never signed a darn thing!