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@krcc

Diagnosed with MCTD last year. I guess I don't understand what a flare is because I am always in pain...yes, every day. I take HCQ daily and that saved my kidneys from certain death. I did have 3 rounds of high-dose/taper Prednisone, which worked great initially for relieving pain, but caused 40 lbs of weight gain and a painful buffalo hump (which has decreased after four months of no steroids). Can't try Methotrexate due to kidneys. Cellcept makes me nauseous and dizzy so I am going to try Myfortic. AIP and vegan diet hasn't helped nor has vitamin supplements (Bs, D3, magnesium). My heart, kidneys, digestive system, musculoskeletal system, and now liver are all taking a beating. But my lungs are good...the one set of organs that is supposed to be affected the most. I use a walker or wheelchair every day, so does this mean I am constantly in a flare? I wish I could offer advice but I could use some too.

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Replies to "Diagnosed with MCTD last year. I guess I don't understand what a flare is because I..."

Hello @krcc I’m so sorry that you’re still having a difficult time. Are you seeing specialists for your care? In her comment above, @colleenyoung mentioned some discussions on MCTD that you may wish to follow
https://connect.mayoclinic.org/comment/737087/
Are you seeing a rheumatologist who specializes in autoimmune diseases?