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.

[James10500]

This is good to hear.  I am post tx 10 months, some days I swear I've never felt better.  But some days I'm fatigued for no reason, but they are decreasing in frequency.  Joint pain all gone.  I'm glad I did tx glad to be SVR and looking forward to ac healthy future.  

[vagirl822]

I DID TX BACK AROUND 2006/2007 AND WAS UNDETECTABLE WITHIN 2 MTHS. I WAS ON INTEFERON AND RIVABARIN FOR 6 MTHS. HAD TERRIBLE DIARHEALL, BUT THAT WAS IT.OH I ALSO GOT TIRED EASILY AND SLEPT ALOT. NO SX SINCE TX. STILL UNDETECABLE.

[DoubleDose]

That is very interesting....I have also had four spots on my legs removed in the past three years (post-tx), and one form my arm, and one from my forehead.  Never had anything like it before tx, and new ones seem to be developing.  I also have developed a sort of permanent rash on cheekbones, that my Dermatologist said is Rosacea, and another spot on cheek that he said is Sebhorreac Dermatitis.  Never had ANY of this stuff before tx.  I know one of our older members, Jim, had major issues with rash and Rosacea after tx.  I didn't even think to connect the pre-cancerous leg patches to the tx....but just like my facial rashes, I will bet money its a direct immune system response to the treatment.  For me, it seems that much of these after effects seem to be getting worse, and more constant.  Tendonitis is another issue that I am developing in legs, arms, shoulders, etc.  Others on the forum have also complained of this problem post-tx.  This of course goes along with frequent costochondritis, joint pain, mouth sores (cheek and tongue), irritated dry eyes, fatigue, and brain fog, .... through almost 10 years of being SVR.  Is it any wonder why I place an asterisk after the word 'cured*' !!!  Probably would read better as cured???  

DoubleDose

[moonlit_lake]

I was treated and cured many years ago as part of one of the original studies in Washington, DC.  A damaged thyroid gland was the only side effect that lasted (my hair grew back; I stopped feeling like I had the flu; I could sleep again; I regained my energy, etc.)
SOMETHING NEW...I have basal cell carcinoma patches popping up every couple of weeks on my legs.  I've never been a sun person, never enjoyed the sweat.  But this is crazy--six spots on one leg and one just popped up on the other.  This was an immune system treatment.  Could this be related?  Every time I go to the dermatologist he tells me he'll see me in a year.  He seems to be surprised that I'm developing these so quickly.

[xcable]

I  can only speak for myself, I finished a 48 week treatment in 2005. I started with 11 others at the VA, I was the only one who finished. To this day I still have extreme side effects from the peg/ribo combo, For someone to suggest otherwise makes me wonder there motives since I know so many other vets who like me struggle on a day to day basis.

[printze]

I thought after researching about this disease and the excitement about  the  new treatment I was in a good place at the right time, I am no longer sure abut that . It ook me some time to accept  this and to prepare for the treatment mentally and physically , now  all the horrible long term effects that are life changing ? I am seeing my doctor in January and maybe I will postpone treatment and wait for next new breakthrough if able to. Now  I am depressed .