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.

[DoubleDose]

Thanks for your comments.  Therein lies the rub, as they say.  I have had several full workups by a very top end rheumatologist, and he saw all the same connections to Lupus...EXCEPT, the Lupus blood chemistry does not seem to match up with my test results...in otherwords, I have a "Lupus-Like" disease pattern, but the blood tests specific for Lupus are chiefly negative or just 'different'.  Same with RA, and Sjogren's.  And I mean he ran TESTS!!!!!  Thirty or so specialized, very expensive tests to really verify whether or not it was 'classical Lupus, or RA or similar.  He says that he has seen this same set of symptoms in a good number of post-tx patients who were also SVR, and the pattern seems to be very similar.  He calls it a post-interferon autoimmune illness, or a 'Lupus-Like" illness.  Its weird that many of the autoimmune markers are entirely absent...but my symptoms are spot on for Lupus...albeit a mild to moderate case...not severe.  So maybe the Interferon causes a "Lupus Type" illness in some of us, but its entirely different in its chemistry from classical Lupus.  Maybe they need to come up with new tests to identify THIS particular illness...because their standard tests don't 'see' the illness...and it sure is there...and manifest in a variety of obvious physical symptoms and physical changes.

Maybe more will be discovered as additional people join the list of post-tx problem cases, and pursue answers with their doctors, and rheumatologists.  Its a lonely situation!  

Thanks again.

DoubleDose

[curiouslady1]

My decision to wait, again, was a superior one based on knowing now that I am GT 1 with a TT allele and no treatment available in 1992 except interferon as well as ongoing knowledge of  a low degree of fibrosis.  I was fortunate to come from a medical family which helps in making choices such as this one.  Please note that I have not shared with anyone on this list what I do for a living nor any specifics about why SOC would have damaged my career.  

I am truly sorry for your pain.  Part of my concern is that people will continue to treat with interferon even though research information and their own personal health and liver status indicate that they can wait as well and do not have to chance going through what you are going through.  I wish that people here would advise more caution when the person clearly indicates that their condition is not severe.  There seems no compunction in encouraging others to treat or tilting the advice in that direction despite all of the evidence available about lasting side effects and often, despite the individuals stated concern about the side effects.  I don't understand why.   This last is not so much directed at you Trish but at everyone who has read and contributed to this thread and others related to interferon.   Peace.

[willbb]

My response was only to relay my  own experince to give those now on Inf. some info,,that is does not happen to everyone and my sympathies have always been to those that have not been as fortunate..
Will

[Trish77]

You ARE fortunate to have no lasting side effects...I only wish you were fortunate to also have a response and SVR as I was able to get to in spite of side effects and lasting (manageable) issues.  I sincerely wish you didn't have to do this again and I hope you have no side effects next time AND an SVR.

I think it's important for people to talk about their varied experiences and knowing that a number of people get through this with little side effects is encouraging.  Many times people come in here with a circumstance such as... "Has anyone SVR'd with only X number of weeks of treatment?" looking for hope.  

There are also people looking for support in dealing with their post-treatment issues and I'm thankful for the sharing with people who have joint pains like me.  I know a fellow who has tinnitus after treatment and there's something oddly comforting about knowing you are not alone, at the least.

Tough stuff to discuss here for sure.

[nygirl7]

Great post Trish!

[willbb]

sorry ..  18 weeks...and  was one of the fortunate ones to have no lasting sx. from  what INF. was  taken.... but that is just my experience ....
Best...
Will