Telaprevir Hepatitis C Experimental drug.

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bostonmike
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 6/9/2010 5:50 PM (GMT -7)   
cool  Hi Everyone,
     
             I read in the Herald a few weeks ago about an effective Hep C drug called Telaprevir. A Cambridge MA. company called  Vertex. The virus was undetectable in 75% of patients who were given the drug for 12 weeks along with the standard therapy, Ribavarin and the interfueron shot for 48 weeks. Before this new drug only 45% were undetectable. The last time I wrote my situation had got better. I have got rid of  alot of the fluid retention. I am down to 195-200 pounds and have not gained much in the last month. I still have a little edema in the legs. My stomach is still a little extended but much better than it was. I still have the wasting syndrome in the upper body, shoulders, chest ,arms, neck and   facial area even though I eat very healthy. I have added more red meat to my diet steak & pork tenderloin, and lean hamburger instead of just fish & chicken. Eat a ton of pasta and fresh salad with fresh fruit  everyday. It does not help the wasting situation. I see my doc next Thursday and want to find out when I can start on the new cocktail with the tela previr. Last time he said January. I want to stat it ASAP. Have to check out the insurance situation because I have Masshealth until the end of the year. It started in 12/03/2009 because I collected Unemployment for over a year. I f I start the meds now their might be a lull in my insurance, so I may have to wait until after the New Year.  I am not 100% healthy, but hope this cocktail will stop the cirrhosis and my liver can repair itself. I hope that is how it works. I hope the damage is repairable without a transplant. Hope  everyone is doing well .Talk to ya's later. BostonMike. 

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/9/2010 6:26 PM (GMT -7)   
Hi Mike, Thanks for the update. Glad you are doing well and taking good care of yourself.
I believe that Connie is waiting for that same drug it to be approved, apparently it is still in trials. She says that it should be available early next year. I believe it's for the Hep C. If it kills the virus then the virus will stop attacking your liver is they way I understand it.

But I would definitely be very careful on how much red meat you eat. It's hard for a damaged liver to process it, which contributes to the ammonia levels to rise. Every time my husband ate beef..........I would up his lactulose or he would end up in an encephalopathy episode.

Thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/9/2010 7:23 PM (GMT -7)   

Mike, I am really glad to hear that your fluid retention problem has mostly resolved.  The Telaprevir is given along with the interferon and ribavirin for 24 weeks.  It is in final trials and the stats I've seen say 70% have clearance of hep C.  It will not be widely available until early next year.  My hepatologist has been keeping her eye on this one and I will be seeing her tomorrow, so will try to get more info; i.e., just when it will be available.

I'm with PG on the beef intake.  It is the most difficult protein for the liver to digest.   I wouldn't have it more than once a month.  The muscle wasting is just part of the disease process.  Try some soy products for protein, particularly edamame (shelled raw soybeans that come frozen and you can use them in stirfrys.)  Or some peanut or cashew butter.

I'll let you know more after my consult tomorrow.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/9/2010 9:54 PM (GMT -7)   

Mike, you may not have to lose your masshealth Doug and my sister in law kept theirs as they were considered terminal with cost of medical being out of reach for their medical condition. The federal government told us both that when insurance was cancelled for my sister in law due to my brothers income. Please my email is listed if you have any questions.

Sue


Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2010 4:03 PM (GMT -7)   
As promised, I queried my Mayo hepatologist today about the new Vertex treatment in American trials that combines Telaprevir with interferon and ribavirin.  She said there is 75% clearance of HCV in the latest phase of trials.  She said there had been some relapse, but not as great as on the combo.  The protocol is for 12 wks. of the trio, then 12 wks. of the interferon and ribavirin alone.
 
Another US company, Genentech, has a similar trio in trials, but their 3rd drug is Danoprevir.  Genentech's trials have been primarily in Europe.  At this point, it is unknown which treatment plan will first receive FDA approval.  However, one or the other is anticipated to be approved in 6 months to a year.  Medicare is expected to cover it.
 
I asked if there would be any particular testing I would need to undergo prior to starting treatment and she said there was not.
 
The doctor also mentioned that researchers have isolated a gene that predicts whether a patient will respond to interferon.  I don't know if that would play into who will get the new treatment or not.
 
So hang in there, all those who currently have active hep C.  There is better treatment coming!
 
Mike, cirrhosis (which is basically scarring in the liver) never goes away once you have it, but if the HCV is no longer active then further scarring should not occur.
 
Hugs,
Connie
 
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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