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.

[CoWriter]

BTW,  Peyronie's disease is also a symptom of  Lupus.


"Men having the inflammatory condition called Systemic Lupus Erytematosus more often get Peyronie's disease."

http://www.lupusmctd.com/index.php?topic=484.5;wap2

[CoWriter]

I hate to have to tell you this and if I'm wrong I'll be happy.

All your symptoms...the tendonitis, costochondritis, joint pain, oral ulcers, irritated dry eyes, brain fog, fatigue, precancerous spots, and permanent rash on cheekbones....are symptoms of Lupus. Especially the butterfly rash. Men seldom get Lupus but interferon can cause it.  

I am so sorry.  I can only imagine what you've gone through all these years. I suggest seeing a Rheumatologist.

Wishing you all the best,

Co

[rambleon40]

Blow off steam?

One finds some small measure of comfort in hoping that the ceaseless suffering and loss one has experienced from treatment might be conveyed and save another from suffering.  

Interferon / riba combination therapy is way worse stuff than most gastroenterologists even come close to comprehending, IMO.  

If you have a doctor encouraging you to treat and that doctor has not told you that you could wind up disabled, brain injured, covered in itchy rashes / psoriasis, in pain, etc, get thee to another doctor, because yours doesn't know what he's messing with.  

Addendum - your doctor should also tell you that they don't know exactly how interferon works, but it amps up and whacks out your immune system, killing the virus in many cases, but often leaving your immune system amped up and whacked out for the rest of your life.  

If you are not hearing that from your doctor, you are not hearing the truth or he doesn't know it.  

[curiouslady1]

The one thing that we can all hope and pray for is that an oral regimen with mild sides will pass muster soon and people like you with your cirrhosis and me with my autoimmune problems will not wait too long to treat.

[curiouslady1]

Pick your poison.  All I know is that if I had had interferon I would have regretted it for the rest of my life.  Not only would it not have cured me but, because I already have a severe skin condition and a career which is dependent on my being able to work consistently, it would have damaged me big time.  The people on this thread are mostly complaining about disability from the treatment.  Today someone posted about how interferon has nearly blinded him.  Thank goodness that there will soon be a way to be cured from this awful infection which does not disable people or ruin their livelihoods.  

[ceanothus]

I hope all will read the post by jwbeenz  above. This is similar to my situation. I've had HCV since 1984 but was going along pretty well, with one decent biopsy early in the game followed by lots and lots of regular blood tests and ultrasounds. Everything indicated that I was not at any serious risk from the HCV. Then in 2004 I had major abdominal surgery for an unrelated disorder. I woke up to the news that I had stage 4 cirrhosis, a liver that did not appear to be any healthier than the failed ones they remove in transplants, and a suggestion that I enjoy life while I can. I followed that with SOC treatment but relapsed, and am now doing triple Tx and praying that it works this time, before I really do run out of time. Counting on the blood tests and the ultrasounds to warn you may make you feel safe, but it may also be a false security.