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

[kaufmannmom]

Before taking interferon and ribavarin (Roche's Pegasys Copegasys), I was a busy office manager at a successful structural engineering firm, I ran our own online family business, I traveled regularly, I was active in the community and at my children's schools and activities, I was social and gregarious, physically active, upbeat and generally quite happy and content. I was able to multi task and was energized in large groups if people. I was successful and felt good. After discovery of the hep c virus and recommendations by three gastroentenologists for me to try the treatment I embarked in the worse medical nightmare if my life. Oh yes I'm still, over five years later hep c free after the horrific 48 week treatment but my life has never been the same. I lost my job within months if starting, then I lost my mind. I am now agoraphobic, anxious, have panic disorder, am agonizingly depressed, suffer from bone pain, nerve pain to the point if soft touch hurting me and exhaustion that never ceases. Medications do not seem to help enough that I can feel normal. I go nowhere now. My husband lost his sexy loving  wife, my kids lost their happy healthy mom, my friends lost their copilot and I lost me. This is no kind if life I'd wish on anyone and I am one of the lucky ones. I just pray sometime soon these poisons are removed from the market. Every life is worth saving. Learning to live with hep c would be my choice if I ever had to make it again.  The profit should not be worth these kinds of human costs. What ever happened to compassion and logic. I hope you never have to experience this kind of living death. If you're thinking of the treatment, don't do it. Exhaust every other healthy safe alternative.  Something better will come.  Peace and love be with you.

[Frank J. Perrotta]

Since Mayo defines it as a Syndrome (my GP did it years before the Mayo) then each individual symptom must be treated of the syndrome. That is what we have been trying to do.

As everyone knows it is difficult to even get a doc to understand what we are going thru so I have been lucky to find a number of docs in various fields who believe PIS and have been helping me treat.

Chronic Fatigue has been the most difficult one to get the insurance companies to cover. There are a couple of very expensive meds that do help. I was on Vyvanse for a number of years and suddenly cut off. I just won a battle lasting 1.5 years to get back on and am feeling a bit better but the battle took a lot out of me!

I fought a long battle to get 100% disability due to this crazy treatment and finally won! I should not have to prove myself over and over again...

[Dee1956]

Hi I was looking for relief from long term sx and came across this that JimJim created, you may have seen before, if not, it is interesting

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64

I believe that people do have long term sx from tx.  I would love to see what people have done to get relief

My best to you
Dee

[Frank J. Perrotta]

You are welcome Dee.

At least The Mayo Clinic is setting some standards in long term sides. They gave us Post-Interferon Syndrome (P.I.S.). Unfortunately unless you are a patient there Mayo is very secretive about what they are doing.

My GP did some of his studies at one of the Mayo Clinics and when we met up I asked about the Mayo and Low Dose Naltrexone (LDN). My GP was sure his old buddies would share what they were doing with PIS and LDN. Nope! They did share that they were investigating LDN and PIS on their patients but would not go into any other details...

Due to the system set up in the USA these research hospitals have to be protective of their research for future gains just like the big pharmas which means they do not look out for those who need care!

Best to all from me as well,
frank

[Shdwsldy]

Thanks for the link Dee.  It's a very sad and scary outlook on treatment :(

[Dee1956]

Hi this may have been posted at another time.  It seems vaguely familiar, I thought I would post here in case it can help someone

http://books4freedotcom.files.wordpress.com/2011/04/post-tx-survey-report-2010.pdf