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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Livin-Right 02/12/2013

I am trying to understand what blood work is every ones Doctor using to base his treatment failure or success of your current regiment. My doctor is almost solely using sed rate as his basis yet the results he is claiming is showing progress are shifting from 80 to 30 and showing no sign of any control to me. He is also watching for possible side effects of the treatments but my concern is what result should be being used to ascertain my diseases advancement or retreat. Any help would be appreciated.

MToennis 02/12/2013

Wish I knew! My doc bases my treatment on symptoms now. She wanted the Plaquenil as she said it kept out organ involvement. But other than that, my labs are normal except for the ANA and RNP.
I know my friend that has RA gets her meds based on sed rate and her symptoms follow.
Mary Ann

klwfroggy 02/12/2013

My treatment is also based on symptoms. She checks some stuff about every six months but she only changes meds and things when I tell her about various symptoms. Except the vit. D. That one is based on blood work.
-Kate

brunob 02/12/2013

Mine is also based on symptoms......as far as I understand the bello work I am getting down is mostly to check liver function and such.

deleted_user 02/12/2013

My sed rate is never elevated, as far as my blood work shows. Yet I have symptoms all the time and sometimes flares. My dr also seems to base my treatment on what I tell him is going on.

Best of Luck getting things figured out with your doctor. It's frustrating and this disease has a mind of its own. :(

AM

Livin-Right 02/13/2013

Thank you all, I have sent all of your comments to my doctor to see what he thinks. Im at wits end. My doctor doesnt care how i feel as long as my lungs stay clear. But as a Man im less than a monk, and sometimes i wish my lungs would blow up. Even the threat of hell and constantly in pain. would be something i earned. I didnt earn this disease

tammib 02/14/2013

My doctor defines success by improvement in my symptoms.

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