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Avatar universal

Long term side effects of interferon

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.
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Avatar universal
ptz
The decision to treat or not is a tough one.. I prayed on it and decided to treat. Remember that these forums are sometimes used to blow off steam.  I don't know how accurately posts on these forums are to portraying the general experience of the tx. Good luck what ever you decide.
Helpful - 0
1689583 tn?1387752394
I am now very confused and scared after reading this long post. I am supposed to start in 2012 treatment . Very minimal inflamation, no cirrossis or serious damage now I am ready to throw in th etowel from listening to all of the comments , now I do not want to treat .
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Avatar universal
I'm 62 & gonna start tx again.  Cirrhosis, big spleen, low platelets, tired & depressed. Enjoy a good cigar. Good wife, dau., grdson. Enjoy reading. Cut way back on body surf & mtn climbing. Ready for Boceph...or not, here I go again! Yeehaw!!!
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Avatar universal
I have been reading the posts on this site for the last week or so.  It has been such a relief to know that I am not the only person that has been dealing with some of the issues I have encountered during tx and post tx.  I was diagnosed In 1994 with Hep C.  I went through treatment which consisted of Interferon 3 times a week.  I completed that treatment but was a non responder. (2b gen)  I didnt clear the disease but it put me back in check and my viral count was super low and sort of what I called "remission".  In 2000 I had a biopsy and was told everything looked good.  The fatty liver was gone and I was doing great.  I was offered the new treatment which was the Peg/rib combo but due to a misinterpretation of explanation by my Dr.  I thought I didnt need it.  I was in a good place in my life and the doc said there were a lot of side effects with the new drugs like depression and he said it was my choice and didnt sound urgent in his request so I didnt think I needed it.  Last year I noticed I was getting really tired and I was always complaining of feeling like crap.  I decided to ask for another liver biopsy since it had been almost 10 yrs.   My biopsy came back bad and I was told that I needed to begin treatment if I wanted to be around in 15 yrs.  If your having your liver functions checked every 6 mo's like a good girl but it isnt showing anything remarkable: Then you have a biopsy and it says the opposite why dont they just opt for the biopsy instead?  There I was thinking everything was hunky dorey with no elevated viral counts and my liver was slowly being destroyed.. They never seemed concerned said everything was good blah blah ..blah... so here I am ... 2 and half months post tx... and feeling aprehensive
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Avatar universal
I have been following your posts for sometime.  Someone asked a question in the forum about sx and the response was something like "Oh I never had ANY, You'll be fine, I've never felt better! "  I HAD to INTERJECT MY OPINION which in effect was "I WENT THRU HELL" get all the info you can, select the doctor you feel most comfortable with, consider being out of work for a year, consider not being able to continue to do the job you currently have, consider the fact that you may become disabled, ect.........because THIS is what I went thru and the only thing I expected was to have flu-like symptoms for around 2 weeks, maybe miss work 1-2 weeks and then I could return to work.NO ONE SHOULD EVER TELL ANYONE THEY WILL BE FINE!!! BECAUSE NO ONE KNOWS!
Helpful - 0
Avatar universal
ptz
I'm a guinea pig in this Hep c experiment.  I am in my third tx all using  interferon dating back to clinical trails in 98,I also did another trail using something called interleukin 10, I think it was 2000.. My second tx was in 02 pegintron and ribavirin...I relapsed after being non detectable.  I'm currently in triple therapy with boceprevir. I'm 62 years old and up until 6 weeks ago I was surfing better than ever and staying in the water longer than the 16 year old kids.  I'm currently in my 16th week and non detectable and intend to complete the tx and I be in the water in the spring time out surfing the 16 year old's again..
Whether this tx has lasting sx is I think specific to the individual.  Just as all of us react to the tx differently and all of us have different sx and different outcomes....who can generalize on the anything about this tx...too many variables.
I have no intentions of having this tx do anything other than kill the virus.
Keep the faith.
Helpful - 0
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