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How do you cope with Mixed Connective Tissue Disease (MCTD)?
Autoimmune Diseases | Last Active: 6 days ago | Replies (121)Comment receiving replies
It is definitely hard when the doctors don't know what to do with you… I can relate in many ways.
I have been diagnosed with MCTD since 2002. Right away I was put on hydroxychloroquine and fortunately I haven’t had side effects from it. They also added Arava a few years later. Because my Scaladerma is dominant, they gave me Rituxin and now they just took me off it as they feel that I am overly immuno suppressed.
Overall I’m feeling fine except for the out of breathness. Drs haven’t been figured out why I am having issues but hopefully stopping Rituxin will do the trick. It is frustrating but keep having a positive attitude. God bless🙏
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I have a flutter valve and do intentional breathing to help with shortness of breath. Seems to help relieve it, where inhalers do not (for me). I think percussion is helpful. There is another device where you work to keep up the balls in it, but I do not have it. I do wonder if it is long term Covid, but no evidence or testing available.