Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 I just want to say how great you guys are. Your like a life-line I did not know I had. It is so nice to get input from people who have been through this. It really helps. I am really upbeat about my NS and have a really good attitude which really helps, but once in a while it really sinks in and then panic sinks in also. I was up most of the night last night worrying. I got the letter that they want me to go for a mental exam and then a letter from my insurance company that they do not pay for the Remicade infusions. I have had two already at 6,000 a pop. Don't know what to do about that and have not even told my husband yet. It seems as though you take one step forward and five back. I am sure you all know what I mean. Don't mean to be such a downer, sorry. Love you guys and feel a special bond. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2007 Report Share Posted July 24, 2007 Lori, There is an appeal process that you can go thru with your MD's. Have the Md write a letter that they have tried you on other immunosupressants and that they did not help you. Also, Remicade has a site that you can go to and download an application for assistance. Just type in Remicade Assistance Program, as your search. You may want to call the insurance company and ask if they would cover Hurmira or Enbrel or Cellcept. Cellcept is the closest to Remicade as it only suppresses one part of the immune system, instead of the entire immune system. It may be that your MD needs to use the diagnosis of Rheumatoid Arthritis to get it paid from the insurance. They are having a party because they decide it's not approved for sarc-- it is however being used off label. The ARCHIVES HAVE multiple articles on these drugs. Hope this helps, and we are so glad you have found us to be a part of the lifeline. Gang, I think we all need to keep tying our threads together and make this rope strong!!!!!!! Love to all, Tracie NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2007 Report Share Posted July 25, 2007 Hi Lori, I am glad that we have been supportive for you thru all this. One note I had for you was about the Remicade. Has your doctor helped you out with the insurance company's decision? When I started on Remicade a few years ago, my rheumy had to actually describe to them what I was going thru and actually put me down as having rheumatoid arthritis just to get it approved. Unfortunately, I had a bad reaction with my blood after 2 infusions and had to go off of it, but it has helped others in the group a lot. I hope this suggestion might help you . That amount of money would be impossible for me - probably the same for you! Well, good luck. Debbie Co-Moderatorloripavey wrote: I just want to say how great you guys are. Your like a life-line I did not know I had. It is so nice to get input from people who have been through this. It really helps. I am really upbeat about my NS and have a really good attitude which really helps, but once in a while it really sinks in and then panic sinks in also. I was up most of the night last night worrying. I got the letter that they want me to go for a mental exam and then a letter from my insurance company that they do not pay for the Remicade infusions. I have had two already at 6,000 a pop. Don't know what to do about that and have not even told my husband yet. It seems as though you take one step forward and five back. I am sure you all know what I mean. Don't mean to be such a downer, sorry. Love you guys and feel a special bond. Lori~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2007 Report Share Posted July 26, 2007 It stinks that the doctors have to put something else on the form to get the insurance companies to pay. My neuro put MS on a form to get me 3 days of SoluMedral?grannylunatic@... Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2007 Report Share Posted July 26, 2007 Thanks Tracie. I sent my doctor a letter and hopefully he can help. I am already on CellCept with the Remicade and Plaquenil. I have been on just about everying else also. Thanks a lot. Lori > > Lori, > > There is an appeal process that you can go thru with your MD's. Have the Md > write a letter that they have tried you on other immunosupressants and that > they did not help you. > Also, Remicade has a site that you can go to and download an application for > assistance. Just type in Remicade Assistance Program, as your search. > > You may want to call the insurance company and ask if they would cover > Hurmira or Enbrel or Cellcept. Cellcept is the closest to Remicade as it only > suppresses one part of the immune system, instead of the entire immune system. > > It may be that your MD needs to use the diagnosis of Rheumatoid Arthritis to > get it paid from the insurance. They are having a party because they decide > it's not approved for sarc-- it is however being used off label. The > ARCHIVES HAVE multiple articles on these drugs. > > Hope this helps, and we are so glad you have found us to be a part of the > lifeline. Gang, I think we all need to keep tying our threads together and > make this rope strong!!!!!!! > > Love to all, > Tracie > NS Co-owner/moderator > > > > ************************************** Get a sneak peek of the all- new AOL at > http://discover.aol.com/memed/aolcom30tour > Quote Link to comment Share on other sites More sharing options...
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