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.

[Emily_MHManager]

Just a reminder that this thread is closed, and we are not allowing new comments on it.

Thanks,

Emily

[Emily_MHManager]

Hi there -

This thread is now closed.  While it is important to know what the side effects of any treatment are, and to hear differing views in order to make the most informed decision for you, it is also important to note that for some, current standard treatment is the only option they may have.

We have members who need(ed) treatment in order to stay alive, and "big pharma" saved their lives.  We also have current members who have lost family members to hep C, or who are very close to death as we speak, and others who have tried everything, and failed. We have members who haven't treated, and are doing fine, and others who are using what could be called alternative treatments.

It's important to note this for new members who may need the treatment and are scared, realizing it's their only option.  

Some have to deal with lingering side effects from interferon, others don't.  It's not a one-size-fits-all situation, unfortunately.

Emily

**********************   CLOSED THREAD   *******************************
                       NO MORE POSTS, PLEASE

[1oftheclub222]

Many of those 95% are cured by current methods, so no they won't die from liver disease....also many will not suffer long lasting side effects, there will be some i am sure such as your self, but there are many here who say they are ok, and i also personally know people who are ok after treatment...what ever percentage you are in is the most important percentage wether it's 1% or 95%...

[rambleon40]

I am alive without having cleared the virus.  I have never come closer to death than the two times I put a loaded  gun to my head during bouts of terrible despair brought on by what I am sure is organic brain injury from interferon.  I am embarrassed from being so dramatic, but these things are true.  

A side effect of treating my psoriasis and psoriatic arthritis with careful eating is that my liver enzymes have, for the first time in 20 years (and just last month and 3 years after my last bout of treatment), gone within normal limits.  

I do not question whether one should treat Hep C.  I question whether the Big Pharma remedy is the only or even the best way.  I do not believe "best" has been proven as there has been no study quantifying and qualifying long term side effects and then doing a proper cost-benefit analysis.

I just had introduction to a river boat pilot in Louisville on Friday.  52 years old.  Loved his job.  Brain now so addled that he can't do it. Arthritis also.  Depression.  Applying for disability.  

That's a horrible (indeed tortuous) situation, and it counterbalances at least one of the 2 or 3 out of 100 that are saved by interferon combination therapy.  

Remember the other 95 out of 100 would not have died anyway without treatment.  

Living like that is daily torture, many times a day.  

[willbb]

What has "how many posts and in what length of time"(by anyone) have to do with anything ...??
I must have missed the significance...
Will

[child24angel]

And people have suffered and died after trying TX three
times as well . He was only 26 .

The newer PI's were what we hoped to wait for
I continue to hope and pray with my friends
for  cure for everyone
with it will come horrific sides, terrible and some lasting sides for some

OK , I don't mean to sound mean, I'm not ( you are alive) thankfully.

[Emily_MHManager]

Please get back on topic, and again, if you have something personal with someone, either ignore it, take it to PM or report it.

Emily

[eureka254]

rambleon40 said:
"I questioned the motives of a poster with 8293 posts in less than 10 years"
----------
Personally I'd be more inclined to question the motives of a poster with 70 posts who has been here less than a year, but in the end, scientific data, research, and discussion should be the debate, not who thinks what of whom and what their intent or ideology might be.

"It is interesting to note that the younger you are when you get it, the less likelihood of serious consequences. Perhaps I'm very unlucky..."
------------
Perspective is in the eye of the beholder, rambleon; my husband was rather young, probably 18 or 19 when he got it but is suffering serious consequences.  Your opinion has merit just as much as anyone else's but I question what your agenda is; my husband would gladly have acquired any of the permanent side effects you are experiencing if only he had been successful in clearing his hcv -- you wanna trade anytime, give me a holler.
~eureka

[mikesimon]

Yes Jeff, truth usually does lie somewhere in the middle.
And I really do feel for your situation. I know that people have suffered as the result of treatment. And people have suffered as the result of not treating.

Take care Jeff and I wish you good luck.

Mike

[rambleon40]

A well stated reply.  

And from my side, I get a message here and there thanking me for saying what I say.  

My perspective is from one who has been grievously injured and felt effects that I never could have imagined before, when I was healthy and strong.  Your perspective is from one who has been wondrously cured.  Perhaps the truth lies somewhere in between.

Thank you,

Jeff

[mikesimon]

It sure wasn't taken down because of anything I did.
I don't mind you writing what you want.
Your problem is that I really have no ax to grind. I didn't enjoy interferon and ribavirin treatment and I did over 3.5 years of the stuff. But Rambleon I finally cleared the virus which I believe was critical to the fact that I'm alive now and in the health that I'm in. I could not have waited till now to start treatment. That's a fact.
Some people have to take interferon and ribavirin and I am always searching for the truth about this disease and its treatment(s).
I have no present stake in the new drugs. I did have a stock position but I'm out now so I have no conflict of interest.
I really wasn't saying that you were inane. I did feel that some of your comments were and I posted what I thought.
I am well aware of the side effects of treatment. I'm also aware of the side effects of having HCV. And they too can be serious.
Do you really think that I haven't heard all of this long before you arrived? I simply have what I believe to be a broader perspective. Like I said Rambleon - some people have no choice but to treat with the SOC and they weigh the risks against the likelihood of success and the benefits to SVR and they make their decision.

Mike

[rambleon40]

Whoever flagged and had removed my last post did a disservice to the community.  

That speech which most needs to be protected is often that which one dislikes.  Some tried to stifle Copernicus when he said the sun was the center of the solar system.  Some laughed at Columbus when he said the world was round.

I questioned the motives of a poster with 8293 posts in less than 10 years who belittles the notion of long term side effects and who posts a lot of "ra ra" interferon materials.  

A person on this board for 10 years should know that long term side effects happen.  Belittling them (or me as he did above) is off base, IMO.

Perhaps I am completely and utterly wrong, but  my point had some factual support whether you liked it or not, and it would have been better addressed by reply than removal.  

[Emily_MHManager]

Hi everyone -

Please do not disrupt the forum with personal insults and fighting. Either ignore what you don't like, or report it.

Thanks!

Emily

[rambleon40]

Thank you.

[orphanedhawk]

Mikesimon had a transplant from hep C, did tx 3 times and finally rid himself of the virus. He is great at digging up research information for all kinds of things hep C, related on many sides of the spectrum.
To call him a rep is ludicrous.
We are lucky he still takes the time to post.

I'm sure I got hep C in my late teens. Nevertheless I landed up with decompensated cirrhosis.
Did tx, relapsed, had a transplant and am doing currently doing tx.
Of course I wish there was something else for me to use other than interferon but you know what? I'm not bitter.

Life is what it is.
Nobody forces anyone to do treatment it is our choice.

Please check facts before passing them as truth.

[rambleon40]

Fair enough to call "BS."  

I cannot find the drug warning in which i saw the 20% number.  


The following says 2.5% to 20%.

http://www.hepatitis-central.com/hcv/ifn/sideeffects.html


A current Pegasys warning says 4% during treatment.

http://www.drugs.com/pro/pegasys.html#S6.1


Research shows that interefron triggers failure, and failure takes some time to develop, per the following .pdf

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCYQFjAA&url=http%3A%2F%2Fjcem.endojournals.org%2Fcontent%2F89%2F8%2F3656.full.pdf&ei=COImT7eIIYaatweMobzaCQ&usg=AFQjCNEwPbG1fqSF7Mc0yIci0PEUsDznJg&sig2=CSqwXcdIJGRM1xfT9_GZeg.

My own thyroid failure did not begin to occur until some few months after cessation of treatment.

[rambleon40]

I was diagnosed in 1992.  Hep C was newly discovered and poorly treated.  The CDC said 5% then. My present math presumes 5%.

I hope this is not an "inane rambling."

I know I am posting a lot.  Forgive me.

[nygirl7]

PS Ramble if you ever watched ANYONE die of end stage liver disease or valiantly fight to get a liver transplant that will save their lives - you would know how ludicrous your posts are.

[rambleon40]

Are your posts that of a pharmaceutical rep?

My posts are of a person who suffers arthritis, disfiguring psoriasis, 3 years+ brain fog, gradually decreasing, and a disturbing deal of suicidal ideation never experienced prior to treatment.

None of these symptoms (with the exception of some degree of brain fog) began until one to two months AFTER cessation of thereapy,m which in my mind mnakes teh studies about side effects during therapy somewhat irrelevant and misleading.  

Perhaps I am in the minority.  Perhaps I am very unlucky.  

On the other hand, perhaps there are enough like me that the 2 or 3 out of 100 saved are not worth the [who knows how many?] badly injured by the drugs.

We do not know the answer.  We do know that there are a "significant" number of long term injuries, though.

Why has there been no long term study?   Why no study of people 12 months afterwards, except from Australia with a national Health Service?  (a study which called for more research and cited a number of patients, some with SVR, who questioned the benefit of treatment)

[nygirl7]

LOL someone questioning the validity of MIkeSimon's articles and studies....if that dont beat all I'll eat that fried green thyroid.

Dear Big Pharma, please stop trying to make new drugs to cure hepatitis C. We dont need them nor want them because we will live forever, we all have beautiful shiny healthy livers and can't risk The Davil Intafaron.

[jules2551]

"It is interesting to note that the younger you are when you get it, the less likelihood of serious consequences."

      ---------------------------------------------------------------------------------

Ramble.....Your above quote may be true but the bottom line is when you actually find out you have Hep C.  If I knew 30 yrs ago, I probably wouldn't be on this forum today.  

Jules

[1oftheclub222]

Amen to that!

[rambleon40]

It's a free country.

[rambleon40]

Thank you, Mr. Simon, member since 2002.   I see you have today posted two recently articles published articles that peripherally counter the assertion that interferon treatment causes cognitive deficit.


Do you know who funded the studies?


As to the study above, what "significant" cognitive functions were improved?