Posted 8/9/2018 2:32 PM (GMT -6)
MCTD is classicly defined as having symptoms of sle lupus, polymyositis (also dermatomyocitis), and scleroderma. I have MCTD with symptoms of lupus and pm and had an extreme and life threatening case. In 2005 I almost died after losing 40 lbs of muscle in a week which left me with auto immune induced hepatitis (near death), quadriplegic with a feeding tube. Lupus hit my kidneys, entire gi tract, joints, blood, and other things. I was a mess but IVIG saved my life and I went through a remarkable physical rehab and within 3 years returned to a pretty normal and active life. PM went into remission and I have not had to treat that for many years. Lupus also did but 4 years ago attacked my liver and blood (platelets). In the past year lupus has given me periods of profound fatigue but none of the labs confirm that lupus is active. 2 years ago I could hike 10 miles or more but now I can barely walk a mile and get tired going up 2 flights of stairs. Although I am getting older and some other problems have developed in the past 2 years I am struggling with daily life due to fatigue. My team of great docs do not have an answer because there are no red flags from any of the tests I have had including heart. For the first time in my life I was sick for 3 months last winter with bronchitis twice and the flu. That might have been a factor and I am hopeful that my body will recover eventually because I still have a lot of life to live....I hope. My personal belief is that the fatigue is either being caused by lupus or that my body has not recovered from my winter illnesses. A nearly 80 year old body is just not as resilient as a younger one. Lupus and fatigue go hand in hand and that is something that all the lupers I know struggle with. Controlling lupus is the key so if you feel it is active and you are not on suppression meds maybe you should be. Hope this helps.
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.
Remain Optimistic and you can overcome.