Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 Glen thanks for the update on telaprevir. thanks for your post regarding insurance companies and who they will or wont pay for. I am a nonresponder to interferon/Riba...back in 98, I made it through 5 months of hell and got so sick from treatment it had to be stopped. I never lost the virus. So I have been waiting for FDA to approve this drug because... I found out a year ago that my hep c has attacked my liver to the point of cirrhosis. They told me for years I would be one of the lucky ones this did not happen to...well here I am. I had to leave my job of 20 years at our local hospital and now sit and pray to have a day with some energy. I swore I would never go back on therapy (I had ALL the side effects and then some). My dr says even if I lose the virus my cirrhosis could progress, not to mention I am high risk for liver cancer now. Lovely. I am really nervous now about the rash side effect of telaprevir cause I seem to get all the side effects. Well I will dig my heels in and hope for the best. I have to try right? Mostly worried about the depressive side effects of the Interferon/Riba treatment...I cried every day for 5 months. Funny how some people just do the treatment and even continue to work. Guess I am just one of the lucky ones. I see my liver doc May 16th and I will update the group on what I will be doing. Sending healing energy to all! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2011 Report Share Posted April 25, 2011 I haven't gotten too exited about new treatment options...I had a feeling the insurance companies would figure a way to cut their losses. I imagine genetic testing prior to DAA therapy will be required as well. I had my first (and last) liver biopsy around 10 or 12 years ago and two fibrosis blood tests since. My most recent fibrosis test suggested " moderate to severe " (3-4) fibrosis. My primary care doc smirked when I suggested that current standard of care might at least slow the progression while I waited for something better. My gastro doc said to come back in 6 months for the new DAA treatment...as if... My primary care is reluctant to refer me to the new hepatologist in my town for a second opinion. I'm frustrated that the mindset seems to be that a mostly asymptomatic type 1A doesn't need treatment... " the SOC probably won't work and the cure is worse than the disease " seems to be the prevailing attitude. The odds of me getting a transplant in California aren't as good as they could be. Time to start working on my " bucket list " From: <shelleyekg@...> Subject: Telaprevir Hepatitis C Date: Monday, April 25, 2011, 10:01 AM  Glen thanks for the update on telaprevir.  thanks for your post regarding insurance companies and who they will or wont pay for.  I am a nonresponder to interferon/Riba...back in 98, I made it through 5 months of hell and got so sick from treatment it had to be stopped. I never lost the virus. So I have been waiting for FDA to approve this drug because... I found out a year ago that my hep c has attacked my liver to the point of cirrhosis.  They told me for years I would be one of the lucky ones this did not happen to...well here I am.  I had to leave my job of 20 years at our local hospital and now sit and pray to have a day with some energy.  I swore I would never go back on therapy (I had ALL the side effects and then some).  My dr says even if I lose the virus my cirrhosis could progress, not to mention I am high risk for liver cancer now.  Lovely.  I am really nervous now about the rash side effect of telaprevir cause I seem to get all the side effects.  Well I will dig my heels in and hope for the best. I have to try right?  Mostly worried about the depressive side effects of the Interferon/Riba treatment...I cried every day for 5 months.  Funny how some people just do the treatment and even continue to work.  Guess I am just one of the lucky ones. I see my liver doc May 16th and I will update the group on what I will be doing.  Sending healing energy to all!  Quote Link to comment Share on other sites More sharing options...
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