Mastersmom RE: Xifaxan

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Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/2/2010 7:10 AM (GMT -7)   
I saw your post in the other thread about Xifaxan. I just wanted to tell you that my insurance company really balked at paying for it. They gave me an initial trial, like your daughter, but then said no. Since there was evidence that it had worked for me. My doctors office filed for off label use and the drug company was more than happy to help fight. They basically inundated my insurance company with files of tests done to show that it works as an off label use for CD. It took almost a month to work it all out, but then each re-application only took a couple of days. I still had to pay for a tier 3 co-pay, but that was way better than paying out of pocket. I'm not sure how your insurance works, but you might have some luck, and the anti-MAP and Xifaxan might be complimentary.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 2/2/2010 8:35 AM (GMT -7)   
That you for that information and your help. My daughter has poor prescription coverage--only $500/year and for non generic only. Of course she didn't realize that until after she had Crohn's so there's no changing insurance now since she is self employed. So that is the first problem.

She had a GI in a large group of 25 doctors before and they were impossible to get in touch with when she had a problem. Her surgeon couldn't even get a response when she had a resection so he and her PCP recommended she switch gastros to one that was on his own which is who we were dealing with when she was taking Xifaxan. I learned quickly that the only advantage to the larger group of doctors was that their employees knew all the ends and outs of getting expensive drugs approved and were willing to jump through the hoops. They got my daughter in a study program to get the Humira free and got coverage for the Cimzia by having a conversation with the insurance physician that is also connected to the pharmacy they work with who approved it as a last resort. The new independent doctor was informed of this approach but he said it's hard to be 'a free spirit' with unapproved treatments, my daughter's case was too complicated for him, and referred us to a teaching hospital 3 hours away which didn't believe that antibiotics were the answer and wanted to try methotrexate.

I contacted by phone and sent applications for help to Salix but they will not help anyone unless they have no prescription drug coverage and they consider the $500/year to be coverage so she was denied. They say on their website that they will work with you and the lady that answers the phone is nice enough but she had no good answers for me. I wrote letters to the insurance company with no response. So secondly, we didn't have a doctor that would help us. The fact that you had one fighting for you seems to be the difference.

Right now, my daughter is struggling with the anti-map treatment and the side effects. I think she would shoot me if I suggested anything further. But the good thing about the Xifaxan was that I don't remember that she had any side effects which was nice after the horrible things that have happened in the past when she started a new drug. I really think if she could have taken a larger dose of the Xifaxan, it may have been an answer. With the anti-map antibiotics, the doctor tells you the sicker you are at first, the better it appears your final results will be. If that is the case, she should have great success with it.

Every time we run into a road block, we have to learn how to move around it to try to get to the prize. I don't know how sick people without an advocate do it. I think my daughter's problem may be stubborn bacteria in her gut ((she had a ruptured appendix after having food posioning (was initially sent home from the ER because they said it was an ovarian cyst) so she was eventually in ICU with peritonitis, had MIRSA and several other antibiotic resistant infectious diseases while there, and got C-Diff last year when she had her gallbladder removed so she's had plenty of bacteria related problems)) and I am bound and determined to find out, one way or another, if large doses of antibiotics will help.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/2/2010 8:46 AM (GMT -7)   
Wow, your daughter has been through a lot. I hope the anti-map helps. I am not all that familiar with it. I can't imagine $500 a year for prescription coverage. That must be very difficult. Antibiotics for a simple cold could run more than that for a healthy person!
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 2/2/2010 8:53 AM (GMT -7)   
I know. Some people have suggested to her that she try to eliminate the drug coverage because she may then qualify for assistance. She has a pain patch which is over $300/month, nausea medication, and hormone replacement pills (she lost her ovaries to the peritonitis mess) also. So the $500/year is kind of a joke.
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