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]

And, just to reiterate my request in the post above:

How about all you LURKERS out there with similar stories....How about registering some comments about your own post-tx experiences.  I would like to hear from new and different posters.  This is an issue that just begs for input, and feedback!!!
Even if you did tx, and now have NO symptoms at all...great, let us hear that too.  I would like to see what the breakdown looks like on the forum.

[DoubleDose]

So,... I understand exactly how you feel!  You probably are aware of that if you have been reading my posts and threads over recent years.  It really is a complete 'bummer' when you go through that first year or two, after getting the SVR, battling weird and nasty symptoms, all the while thinking....they are telling me it will all go away...just a few months...maybe a year...OK, maybe two years....well I am close to 10 years out, and like you, many of my post-tx, interferon generated sx are continuing to get worse.  Its not an optimistic scenario to be confronting!  I have gone from determined, to irritated, to now becoming downright angry about the long term outcome from the drugs, which like you, feels ten times worse than ANYTHING that I experienced prior to my tx'es.  Its one thing to get 'cured' of a possibly deadly disease....its another to come up with a set of conditions from the 'cure' that may be equally disabling, or even deadly at some point.  I wonder what these side effects will eventually lead to, since they seem to get more constant and severe every year.  It sure is a FAR cry from the general information provided during and after tx, that it all calms down in a few months...or maybe a year.  This tx has indeed created its own unique 'disease' process...and its not fun at all.  I can't even imagine what it has done to my brain, and nervous system....but it is not good things, I can assure you.

Please do keep involved on the forum...and let's see how this issue gets addressed by the medical community.  I think we should even form a sort of 'informal' survey of past tx'ers to try to get a rough idea of the percentages or numbers of problem cases out there.  Strength in numbers! Of course, I keep correcting typos as I write this, as always, my brain now works more like a dyslexic, with transposed letters constantly popping up.  I never used to have problems typing, or communicating....oh well, just another nice little souvenir!  

Good to hear from you.

How about all you LURKERS out there with similar stories....How about registering some comments about your own post-tx experiences.  I would like to hear from new and different posters.  This is an issue that just begs for input, and feedback!!!
Even if you did tx, and now have NO symptoms at all...great, let us hear that too.  I would like to see what the breakdown looks like on the forum.

DoubleDose

[HopingforHope]

HI there, I am a long timer in this fight (since 1993) and I am still finding out more, even after being SVR for several years now.  I have been on the Interferon FIVE  full courses (11 months each time because I had 1-b), with them adding the ribaviran  for the last three trx, and the Pegylated  INF for the last two. I relapsed within 6 weeks of cessation of trx, every single time and had given up hope. I was persuaded by a doctor at the U of MN to try one more time with Pegasys, in place of the Intron A, which was the only change in trx protocol, and I have been in remission ever since. I have never met anyone that has been on this treatment that many times and survived, so I think I am in the vanguard there, I have been involved in research trials early on, and made a few docs careers for them, but STILL no one listens to my complaints because here is the kicker ....  I thought I would feel better when the Hep was gone, but I also have nearly every symptom/damage that has been discussed in this thread and I feel worse than I ever did with the HCV! Granted, I know it saved me from possible future liver failure, but it also left me with a host of new problems and got me kicked off SS Disability, (which I fought long and hard for), because I am now "cured" on paper. Really? I could at least hold a job before the treatment, and now there is nothing that I can do even PT, that can sustain me financially that I am capable of and I have no disability for back up! I actually go tomorrow for yet another appeal hearing, with yet another panel of cold bastards that believe everything the Pharm co's spoon feed to them. To those of you being told you are crazy, that you need anti-depressants, or that you have a "Lupus-like" condition - You are definitely not alone!  There are simply permanent long term effects of trx that are not yet documented, because not only has there not been enough time elapsed to study the data on long term effects - the doctors and Pharms don't WANT to study the side effects because they will lose their big cash cow. A caveat here -  if you have moderate liver damage, you had better get your butt on SOME treatment pronto, because I have seen several people die wishing that they had done something sooner! Escalating HCV is deadly, make no mistake! Seeing that happen to friends is what kept me trying to treat that damned bug. But in my situation, I don't think it was the proper route at all (mild inflammation only on biopsies) and I wish that I had never done it. I likely had time to wait for some of the new treatments coming down the pike that may or may not have had the host of side effects that I was told were "temporary" and "would cease when I stopped the medication". Really? How long should that take? I have been off the drugs for five years now! And I feel worse than I ever did and now there is no clear cut reason, so no doctor will help me. No doctor wants to fight SS either, with their reams of "proof" that it has no long term side effects. Funny thing about that is, the "proof" was written by the same companies trying to get the drug approved to market and profit from. Can anyone say "conflict of interest"? And does anyone know a good lawyer, because I think there is a class action lawsuit just screaming to be filed here?

[CoWriter]

It's not unusual for Lupus tests to be negative.  It's best to do them when your symptoms are acting up

While most people with systemic lupus have positive ANA, in a small subtype called Ro-lupus, ANA stays negative. The test is hard to perform, so different labs can get different results. So repeating them at a different lab is also a good option.  

Last but not least, a biopsy of the butterfly rash can usually diagnose Lupus.  

Co

[rambleon40]

http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm#section1

[Trish77]

Your decision to wait was what you felt was best for you taking into account all your own specific variables.  That doesn't mean it's right for everyone.  And to say that you being a TT alele would have meant you would not have been cured with INF and Riba treatment is inaccurate and goes completely against the statistics.  Those with TT allele are considered to have a lower rate of SVR but not a 0% chance of SVR.  You also need to consider there are those with TT allele who may have a more advanced degree of fibrosis than you who cannot afford to wait for non-INF treatments.  Why would you make an inaccurate statement that takes hope away from someone who needs to cling to hope?  People do get SVR against significant odds and in my personal opinion, you should take greater care to consider other situations beyond your own.

I think you overstate the case here for the amount of urging people to go into treatment that happens on this forum.  There were many suggestions to hold off on treatment to wait for the new drugs.  There are many suggestions here to consider all your variables and not rush into treatment if you are early stage damage.  You'll also find people suggesting watchful waiting if one does wait.  You'll also find that we tell people to slow down, take their time and get educated and understand all their options and know their own particular condition and know what they're getting into before going into treatment.

Everyone has their experiences and they bring a bias sometimes.  If you're someone who has lost a loved one to liver disease, it may scare the crap out of you to hear someone is waiting to do treatment.  However it's important that we think beyond ourselves and realize every situation is different.

Thanks for your thoughts however I don't need anyone to be sorry for me.  I'm incredibly active and involved in life and my physiotherapist tells me I can do practically anything I want, can cycle, work out on weights, can play squash even, just ixnae on the running for now. She also tells me I may be able to improve my situation with targeted muscle-strengthening exercises. I live a good and full life with minimal interference.  Nobody needs to waste any time at all feeling sorry for this SVR gal.  

Wish you the best with your treatment.

Trish