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

[spontcumb]

I have to comment on your post.  I went through Hep C treatment with interferon/ribavirin twice.  Within 2 months of beginning the first round of treatment, I began experiencing symptoms which I had not been made aware of by my doc.  Loss of hearing.....eventually ending up with a 60% and 50% loss of hearing in my right and left ears respectively.  Within 10 months, I had lost 10 teeth, and less than 1 year after the final treatment, all but 2 teeth had rotted and fallen out.  I won't go into everything else that's happened to my body and brain.  But I will state that I know quite a few folks who have gone through the treatment and are experiencing very many and very similar, long term side effects as myself. I just feel that you're making idiotic assumptions about the number of people experiencing long term, negative effects of treatment.  Assumptions based on the number of "Posts" or "Comments" by individuals on this site. Do some research of your own and you'll find that there are MANY people just like me, who have been left disabled by interferon/ribavirin therapy!
Peace,
JP

[desrt]

"This Lloyd guy" is someone who seems to not understand even the basics about HCV and sells books bashing IFN. Regardless of what the group consensus on milk thistle is, the latest studies show it to have no beneficial effect.

[ALDONE]

I was diagnosed and treated for Hep C 7.5 years ago. I had gotten hep 31years prior to treatment. I was diagnosed with Lupus 20 years prior to treatment. I to showed all the symptoms even though the test results were inconclusive. When I was diagnosed I tested positive for cryoglobulinemia and Raynards (sp?). There are also other rheumatilogical disorders that are associated with Hep C. After completing treatment I felt better than I had in years. Two years  ago I began having problems with, joint and muscle pain, sensitivity to cold ect.... I have since been diagnosed with mixed connective tissue disease. I don't believe this was caused by the hep c treatment. Rheumatilogical disorders can be triggered by other illnesses.In most of the information that I read prior to treatment there was mention of these illness being RELATED to hep c. Short bursts of prednisone, maintaining a good weight, a good attitude and having a rheumatologist that takes me and my health seriously is VERY important I choose to live in the solution. Thanks for your post
Always Hopeful

[jerialice]

who is this Lloyd guy and what is the group consensus on milk thistle? Is it as helpful as claimed???

[jerialice]

mike i have tx'd twice on the old paradigm. i am interested in pharmasset, do you have any info on where i can get more info? i want to try to get on a trial or even any of the others....
thanks!
JA

[sandalwood]

In Australia, when I had my treatment in 2006/7, my weight was monitored weekly. The dosage was guided by the severity of my symptoms. Maximum dosage was given when we could take it and minimized when/if we were really wiped out. We were issued with a diary to keep track of our experience. It would have been helpful to give an account of our diary in relation to the tx/sx/dosage to the drug companies if we chose to. I suppose the doctors gave that information to them under anonymous terms. Knowledge is power. I think that the area of informed consent lies with making an informed choice, and on my part, I was not told of the long term implications surrounding the drug, I was told that it may take 2 years to feel recovered. Still waiting.....