Guest guest Posted August 7, 2006 Report Share Posted August 7, 2006 --Hi Tracie, Thanks for emailing back. Its so nice to talk to someone about my condition that doesn't just have a blank look on their face. I will check out the web site you gave me. I tried last year to appeal the insurance and even though I had taken all the other medication and they no longer worked, they still denied me. I took a loan out to pay for three months of humira and it worked wonderfully but due to lack of funds I had to quit and within a year I have gotten worse. My doc orginally wanted me to try remicade but that scares me because he said you can have severe allergic reactions. I hope it works for you. It sound like it is. I'll keep fighting insurance. I can't keep taking loans out. Thanks for listening. Angie - In Neurosarcoidosis , tiodaat@... wrote: > > Hi angie, > > I'm sorry that you haven't had much of a response today. Right now, all of > the moderator's and our owners are in flare, so we're doing a " tag- team " > getting the emails answered. > > You said your MD is trying to get approval for Humira. If he will document > that you've been on the Methotrexate, Imuran, and Prednisone-- along with > whatever else you've been on, and that the disease is still progressing-- that > should get you thru the Appeals process. > > Humira, Enbrel and Remicade are all showing some progress with slowing the > disease process. Here is a good site that talks about the BRM's (Biological > Response Modifiers) and what the stats are finally beginning to show. > > http://www.medicinenet.com/script/main/art.asp?articlekey=40225 > > I have been on Remicade now for about 15 months out of the last 2 yrs. I > went thru the clinical trial and had received the drug. The primary side effect > has been an increasing exhaustion-fatigue with each infusion. It now takes me > the better part of a week to recover following each infusion (I get them every > 4 wks). > > Darlene, our co-owner of the group- is in serious condition with > Histoplasmosis-- which is basically systemic candidis (yeast) infection throughout her > body. This does concern me, as I am getting yeast infections following each > infusion-- so it's Diflucan chaser time for me. > > The upside is that my brain function is higher, my lungs are working a bit > better and I'm not having to be on oxygen 24/7 (I still have to have it at > night, and if I go up in elevation). > > With any of the BRM's, you have to take Methotrexate or Prednisone with it, > so that you don't build anti-bodies against the BRM. You also must take Folic > Acid so that your B12 does not end up depleted. > > For me, it's been a cocktail of Remicade, Methotrexate and Plaquenil that has > me maintained. > > I have multi-system sarc, eyes, sinuses, lungs, lymphs, bones and brain. > Prednisone was basically feeding my sarc, and the side effects were no longer > acceptable. > > Anyway, know that you are with a group of sarcies, and that at 410 members, > we have a wealth of information. Our ARCHIVES and our LINKS have sites and > references that you can print out and take to your MD's. > > Also, know that we are here for you, and even if it takes a day or so - > someone will get back to you and help with your questions or concerns. > > Sincerely, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
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