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Hepatitis C: Post Treatment Issues Community
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Avatar universal

Post Interferon Long Term Side Effects on other sites

Here is a site that I stumbled across today while Googling long term interferon after effects.  I also found several other sites as well, also 'chocked' full of people detailing their horrible experiences after using interferon.  This sure supports what many of us have been saying and experiencing!!  It is quite disturbing to read additional accounts, some even worse than the experiences documented here on our forum.  Here is the link:  (you will have to copy and paste)

http://www.lawyersandsettlements.com/forum/viewtopic.php?t=10


I will bet that sometime soon we will be hearing about these issues in the media.  The sheer volume and severity of the problems will cause this to become an issue that will provoke national media attention....and with very good cause!!!  I just don't think we were really warned of these kinds of long term outcomes.  I know I wasn't.

DoubleDose
78 Responses
Avatar universal
DD you would have to do a lot of exploring and reading to find out and most people just trust their doctors who are busy and easily forget that their patients don't know what they know and, even if they did, they are scared and don't listen or store information the way that people who are not scared do.  

Lloyd Wright I think his name is has a site on this subject.  He is perhaps a bit of an eccentric.  He has been around for decades and was one of the first if not the first to try to bring HepC to the forefront.  His one book I got back in the day was mostly impressionistic and not scientific and he is a natural healing guy which has its definite down side but his heart is in the right place and he has been very passionate about the subject of HepC.  Unfortunately, I believe, he is a bit too extreme and outdated on the side of self and natural healing.   But that is beside the point.  There are a lot of anecdotes about ifn at his web site.  I don't think anyone needs to go there though. This site has plenty of horror stories that are published everyday.

And let us not forget.  For those people who cannot wait for more benign treatments (and I am not talking about the worried well), who are severely fibrotic or cirrhotic; it may be counter-productive to harp on this aspect of triple treatment too much.  For these people, support and positive strokes and words to quiet anxiety can be far more helpful for treatment and peace of mind.

Lastly, I ask you, what do you recommend?  Don't we have to do more than demonize interferon? . . . like support and advocate for more benign treatments, join trials to try to bring them into the marketplace,  advocate with our doctors who, in turn, can speak on our behalf with drug reps, researchers, chemists etc. to never, never, never quit on trying to change the way things are now?
163305 tn?1333672171
Anybody can do a search and find horror stories about interferon.
The reality is its a crap shoot.
Some people have horrible side effects, others have almost nil.
I think a positive attitude is better than being fearful from the start.

Newer better meds are being tested. Hopefully interferon treatment will become obsolete.

In the meantime, when the choice is facing possible liver transplantation
( in my case a second one)  or death, I'll take my chances with interferon.

And, I think more people post complaints.
Few people come on a forum to say, 'life is grand, no side effects, no problems.'


1 Comments
A positive attitude????!!! This treatment has ruined my health and now I have no alternative treatment to help me. I will die from the end result of this horrific treatment.
179856 tn?1333550962
I think a positive attitude is better than being fearful from the start. "

Amen sista preach it to the choir! (And get that SVR now please I'm tired of waiting to put the red shoes back on ;)
148588 tn?1465782409
Lloyd Wrong's "heart is in the right place" only if you think a wallet is a good place to store your heart. Since he has studied HCV so intensely you would think that his misinformation would have to be deliberate.
Avatar universal
Ha, well maybe so.  I haven't followed his adventures.  I didn't find the book I got back in the nineties very helpful and was suspicious of the remedies and milk thistle although have to admit I did fall for some of the hype for awhile ;)
Avatar universal
why are we not seeing more class action lawsuits involving interferon?  all a lawyer has to do is sign up two interferon victims and it's gravy train time. if there are in fact thousands suffering from post-interferon side effects.


i am sorry that there are those that suffer from post-interferon side effects, and i hope i do not become one of them. but what choice do i have with cirrhosis, portal hypertension and varices?

blessings
eric
179856 tn?1333550962
I'm sure all the folks who have to suffer through radiation didn't like it very much either but presented with little other choice than stage 4 cancer they manned up and did what they had to.

Is modern medicine perfect, hell no but it's getting better and better for us heppers every day. For those of us who remember having NO option than to treat longer, double dose the meds and just pray as hard as we can - well I think some of us have more long term effects than the normal joe does today who only treats for 24 weeks.

It's getting there and maybe someday interferon will be gone but let's see what long term effects the newer meds might have too. Faced with the tough choices you gotta do what you gotta do.

Lloyd ew haven't seen his name stinking up the place in a long long time. Now THAT is progress :D
1669790 tn?1333666195
DD, I don't doubt for one second that some experience very negative effects of exposure to interferon and my sympathies to those having a difficult time with them.  However, from May 2004 to current (7.5 yrs), only 13 people responded on this website to indicate their problems.   Considering the number of people that undergo trt each year,  a 2/year average demonstrates to me how small this "affected group" could be.  

Additionally, the symptoms described are so generic that a direct effect from interferon is very difficult to conclude considering how many other diseases could display the same symptoms.  Again, I'm not second guessing these claims, but how do you draw any conclusions from anecdotal information like this?  This information presented actually helps to support that there are fewer afftected than I had originally thought.  Obviously, this website isn't a scientific way to measure anything, but considering the sample size, the numbers don't support the large volume that you claim in your post.
Avatar universal
Lloyd Wrong's "heart is in the right place" only if you think a wallet is a good place to store your heart.
---------------------------------------------------------------------------------------------------
  :0..

Will

Avatar universal
Just as we have moved beyond Lloyd who was all there was in the early nineties or nearly so, someday we will move beyond interferon ;)
179856 tn?1333550962
Obviously, this website isn't a scientific way to measure anything"

Hey what cho talkin bout Willis, we sure think we are ;)
Avatar universal
No one with any degree of serious intellectual curiosity followed or believed in Lloyd Wright or held him in high esteem. He has always been a charlatan and a thief of the worst sort.
Comparing him to interferon is a joke - a very bad analogy, if you will.

Mike
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