Post Interferon Long Term Side Effects on other sites

[DoubleDose]

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

[sandalwood]

Thanks Trish, I get your point, and I am a little bitter. Living in constant pain and fatigue does that to you. The doctor was a little patronising in his tone and said that nothing would be done about it as there would need to be many others reporting to have an impact. I will ask him to make a report, and add to the others (hopefully) that have also reported their post treatment circumstances.I guess I feel that it was coincidental that he offered to acknowledge the drug company after I had approached it. I hadn't told him I had approached them, and I feel the drug company may have traced me. I have an ambivelant relationship with him, but he has treated me respectfully. I have this link which has a post treatment research article that was done and has some interesting conclusions concerning informed consent. Kind regards, Sandalwood.

http://www.sprc.unsw.edu.au/media/File/Recovery_from_hepatitis_C_treatments.pdf

[ArthursMom]

I'm certainly not one of the many super smarties here, but, as I'm reading this thread, I 'm thinking, how does anybody know that it's the interferon causing the problem?  How could that be proved? I guess I'm saying I see your point! ; >

[fretboard]

Great topic.  That said, I believe that most people who suffer after tx and totally believe that it was caused by the interferon could be wrong.  Maybe they became depressed on the interferon as it brings up all kinds of stuff both mentally and physically.  Maybe they had never been depressed in their life, prior to tx and now they are but they're in denial.  It's certainly possible.  

It's also possible that some people have definite problems neurologically or physically but before all that can be honestly looked at the depression needs to be assessed as well.  I find that alot of people who find themselves in the position of being messed up b/c of tx won't even take an antidepressant because they have never been depressed before in their life.  If they continue to keep that attitude then they may never find out what's really wrong with them.  I'm just sayin'.  

  

[Trish77]

I would take your doctor's comments differently.  Doctors are required to report side effects that are not listed as known side effects of a drug.  If there are enough reports of those things, the drug companies have to respond.  I believe that's a very simple explanation of how it works.  What your doctor offered to do was to go the extra mile and report that his patient has side effects from interferon that have not as yet been acknowledged.  What do you think of that possibility?  If yes, then you might want to take your doctor up on this.  The drug company is the one who will want to cover their *** and you won't get very far talking to the drug company on your own.  However, if the doctors report these things and there are enough reports, then a response from the drug company is required at some point, to provide fuller disclosure.  I think your doctor offering to do this IS your voice being heard.  

Just my take on that one.

[sandalwood]

I approached the drug company for information post-treatment and they sent me the consumer information that comes with the meds. When I requested that I wanted some information regarding any research done on post treatment they got very uptight. My next visit to the GP he asked me if I would like him to lodge notification to the company about my persistant side effects 2 years post treatment. I think the drug company had contacted him about me, and he was wanting to cover his ***. It's been 4 years now and I have an array of 'conditions' that all manifested during treatment but are somehow distanced from their onset. I feel like I am not heard. I cleared the disease, but my quality of life is impacted.

[flcyclist]

DD, thanks very much for sharing your story.

Just to be sure I understand, your first round was 64 weeks, then the second round 72 weeks, for a total of 136 weeks on interferon?  

Congratulations on your diligence and ultimate SVR.  I'm planning for 48 weeks and thought that was a long haul.  It is inspiring to hear what you've endured, but very unfortunate that you've been left with collatoral damage from trt.  Very sorry to hear this and hope it doesn't progress any further.  Best wishes to you.