MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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Allergies & Immunity
/ MCTD Support Group

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brunob
brunob
I was diagnosed a few months ago with mctd with intersttial lung disease, the meds are harsh and zi seem to have lost all my energy. I am on prednisone, plaquenil, Imruan, celebrex, celexia, nexium and fosamax. i am so tired and down, have gained weight and because of the lung problem can't exercise. Anyone have any advice?
deleted_user
deleted_user
Warm welcome to the group & to DS!!
Yes the meds are harsh yet some of them are helpful...question though why are you on so many of them all at once?? The prednisone will be the biggest culprit of the weight gain...happens to nearly everyone who takes it...Imuran will keep you run down because it suppresses your immune system making you more prone to infections of any kind...plaquenil will cause hair to thin and eye problems if taken for long term (usually many years)...celebrex causes stomach problems like IBS....the best recommendation is plenty of bed rest...healthy foods...and some exercise too but not when you are feeling run down...Yoga, swimming, stretching & light weights are good to do but keep away from serious workouts as these cause the body to get more exhausted...I hope that you get feeling better soon
~Donna
brunob
brunob
thanks for the post, this is the first time I have used a support group. My friends and family try to understand and help, but it is nit the same as someone who knows. I don't really know why they have me on so many different meds, I think they were just trying to cover all the basis and see what works and what doesn't. I see the rhumatologist in 3 weeks and see what she has to say and then the respirologist next month for another lung function test to see if there is any improvement. the lung issue worries me the most the joint pain is mostly manageable.
deleted_user
deleted_user
I hope that they (the docs) will have some answers for you on your next appointment...the lung issue thing would be worrisome for me too...at this point I dont have any major organ involvement from the MCTD so I dont have any answers for you...BTW MCTD is called UCTD (undifferentiated connective tissue disease) not sure why they changed the name from mixed connective tissue disease but that is what my Rheumy called it last time I saw him....anyhoos, good luck on your next appointment....take a recording device with you or take notes when you see your doc...keeping track of what they say helps when I sometimes have a brain fog issue....LOL....which happens frequently....keep well rested and keep smiling too!!
~Donna