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Re: Lupus SLE
Feb 9, 2008
Hi this is my first time to ever talk to anyone on a board. I was diagnosed 2 years ago with SLE and for the life of me I can't seem to go into a remission for any length of time. My thyroid is damaged, jonts hit, lymph nodes tender and swollen and most persistantly my heart gets pericarditis. The pain, chills and fatigue are relentless. I am on prednisone constantly, mobic, and colchicine for the inflamation. The side affects of these drugs are troubling to say the least. I am trying to do mainly organic low fat foods. Do you have any suggestions for me? I take some vitamin suppliments as well.
Re: Lupus SLE
Feb 14, 2008
[QUOTE=troman;3433691]Hi this is my first time to ever talk to anyone on a board. I was diagnosed 2 years ago with SLE and for the life of me I can't seem to go into a remission for any length of time. My thyroid is damaged, jonts hit, lymph nodes tender and swollen and most persistantly my heart gets pericarditis. The pain, chills and fatigue are relentless. I am on prednisone constantly, mobic, and colchicine for the inflamation. The side affects of these drugs are troubling to say the least. I am trying to do mainly organic low fat foods. Do you have any suggestions for me? I take some vitamin suppliments as well.[/QUOTE]

Hi. This is my first time to a Lupus forum too. I was diagnosed with SLE in May 2007. The "good news" was I had so many of the criteria, there was no mistaking my dx. The bad news, I was in kidney failure... They started me on Chemo to suppress the flare and jump start my kidneys (had 4 rounds instead of 12 I was told initially), along with 80MG of prednisone for 3 weeks. Was supposed to taper down to 60MG, 40MG, over next few months, but had a "bad reaction" = psychotic episode & BP 240/120 not to mention the 50 lb. weight gain from the prednisone. Also had water on heart & in lungs. (Couldn't walk with all the water & couldn't get rid of water without walking.) I have SLE stage 4 membranous, Stage 3 kidney disease, Arthritis, & Reynaud's Phenomenon. After the "bad reaction" they lowered my Prednisone to 15MG daily (now 5). I take Hydroxychlorquine & Cellcept to suppress my immune system to keep me in remission. I'm sorry I'm so long winded... Just really excited to have ANYONE to talk to about it. Everyone thinks because your out of the hospital you must be all better. Best of luck to you!:)
Melissa





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