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.

[penn1023]

I hear ya both. I had terrible time on IFN and got Lupus like illness and no cure. I would join the lawsuit. Let me know.

[OdinLovesLife]

I am interested in news about long term side effects. I think it is a good thing to keep up the awareness too. I only treated for 14-weeks but it I am left with long-term side effects that are worse than the HCV. SOC/triple may well be better than a failing liver. I don't have a problem with that concept. But too many in the medical profession are still saying that there are no long-term side effects except, rarely, thyroid problems. This encourages more people to treat when they have little or no liver damage, treat for longer periods, and treat multiple times.

I specifically asked my gastroenterologist about permanent damage and he specifically assured me that there no long-term side effects bar thyroid, correctable vision impairment, and hair loss in men. He said thyroid wasn't a problem because you can test for it and stop treatment if necessary. I am not the only one who has had this sort of experience of being told there are no long-term side effects.

It is particularly important now that a cure with drugs which do not cause so much damage is so close. People need to be making their decision to treat based on complete information instead of false assurances that everything will be alright.

[DoubleDose]

You are probably right!!!  I do need to get off the soapbox!!  I think I have said enough about after-effects...but I guess part of my motivation lately was the number of people posting about their long term issues, then I get caught up in the whole issue, and then there I go again!!  I knoe, enough said.  I also get baited sometimes by people saying the long term sx are from other causes...which drives me right up the wall...hence the comments from the Melanoma site....  I will take a Chill Pill....thanks for pointing out my overkill.............

Also, my recent flare up of sx may have motivated me to jump into the shark tank again.  I will just observe for awhile!!!  Too much energy typing these posts anyway..takes away from my time with my business.....

Happy Holidays!!!!!   DoubleDose, going keyboard-free.

[nygirl7]

How many times are you going to post this same thing over and over Double Dose - a lot of people understand where you got your name from and realize just why interferon might not have been so kind to you.  Heck it wasn't very gentle with me but I understand why as I did it so hard for so long, certainly not for 24 weeks or something so I dont expect to have it as easy as others might have made out.

Good for them for moving on and being cured that is what I say.

[DoubleDose]

Just FYI, here is what one of the HCV Treating medical centers says on its website about interferon and long term side effects!!!   I found this very interesting and wondered where THEY have gotten their information.  Apparently they must not treat anyone .  Here is the quote, and I will not post the name of the medical center.  



"Are there any long-term side effects to alfa-interferon?

The only long-term or permanent side effect reported from alfa-interferon is the worsening of thyroid disease."

Now THAT is just a real HOOT!  Really!!!  It does sound very authoritative though.....  I wonder if that's what they tell all their patients???

DoubleDose

[DoubleDose]

Here are a couple of posts that I copied from a forum related to Melanoma and treatment...they were on the topic of Interferon.  Does any of this sound familiar????

Here are the copied comments:

"djblank1 over year ago

this reply is mainly a question for gfmartin. I was diagnosed in 2007 for a stage IV melanoma that metastisized to my lymph nodes. I had the melanoma and the lymph nodes removed and did a year of the interferon. I still have a few of the side effect symptoms such as the bone and joint pains, the brain fuzzy feeling ( forget stuff easily ) headaches and dizzy spells. I have been off of the interferon for almost three years now and the doc's say that all of these symptoms are not from the interferon at this time frame, but cant tell me why I still have them. I was wondering if anyone else out there has side effects long after treatment?
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Guest Posts: 262246Joined: Aug 3, 2010
Guest 6 months ago

I was diagnosed with melanoma and had full lymph nodes removed.  Went thru 5 weeks of iv interferon followed by about 6 months self injection. Did not complete the full 12 months due to both personal and financial reasons.  Yes, I have had the same side effects (plus very bad fatigue) and got the same response from the doctors (although the first year they would tell me that it would take awhile for the interferon side effects to diminish). So i just dealt with it for 4 years after the end of treatment thinking that it was just something wrong with me... thought i needed to take vitamins, exercise, be more positive.. or maybe it was all in my head?  Two years ago I was diagnosed with chronic fatigue syndrome and fibromyalgia which doctor said was likely brought on by the interferon. It's been a very difficult road for the last six years. I get very frustrated when I read that doctors tell patients that symptoms aren't from the interferon.  There are many people that do have problems for a very long time and don't understand what is happening to them or how to deal with it. They really need acknowledgement and support from their doctor... not denial.  Hope you will get better soon. But if you don't or if it takes a long time, be kind yo yourself.. it isn't YOU.. it is the interferon. "



Interesting comments..........  DD



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