Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 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...
Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 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...
Guest guest Posted August 6, 2006 Report Share Posted August 6, 2006 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...
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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