Who else is living with Mixed Connective Tissues Disease

Posted by flipmodejen @flipmodejen, Mar 23 5:00pm

How are you coping? Can you give any suggestions to dealing with this? I’m open to any suggestions or advice.

Thank you

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amy19 | @amy19 | Apr 7 11:12am

Hello Friends! My name is Amy.

I’ve struggled my whole adult life looking for a proper diagnosis. ILD and NSIP came first (lungs). Prednisone, inhalers, and occasional oxygen, for life.

Fibromyalgia led to Pregablin, and it works well! Arthritis led to Celebrex, also helpful.

RA led to Xeljanz, which was VERY helpful, but caused cellulitis, and later, a staph infection. My current doctors don’t want me to go back on it, but I felt ‘normal’ and want that feeling back!

My Pulmonologist is now my Concierge PCP ($4500/yr), and he agreed to prescribe Tramadol 50 mg. to use sparingly.

Spinal scoliosis and stenosis led to Elavil 10 mg., which I’m still not sure about.

My new Rheumatologist ran tests that indicate MCTD. Finally, my life makes sense! Has anyone tried a rheumy med they actually like? What works for you?

Thank you for reading. I hope to hear from each of you. Sending sunshine your way!