MCTD !!! ANY and ALL help will be greatly appreciated !!!!! - Immune Disorders Message Board

katmuskie · 04-06-2008, 07:35 AM

I have been RX'd with MCTD..This has been a heck of a rollercoaster ride.It started in 1998 as FMS,then Plumervinson Syndrom,then COPD,Lupus now MCTD. My labs have been ANA+ for awhile with a speckled pattern now they are coming back with a U1RNP+ with high Teters , etc all my #'s are way too high (or low).Does anyone out there know anything about this disease.Any help would be appreciated. I eat a very well balanced diet, vitamins, 5 different types of steriods (ugh and still am losing weight) they have tried Lyrica,Clozapam,Tramadol, Ampatrypaline, and on and on. Some days I can't hardly move,or breath,my kidneys are showing protein, basicly my connective tissue is turning to stone..enough whining IF ANYONE knows of anything please let me know....Thanks

have been to Rhuem,Endrocorn,Pulmon, Internal Med, Infectious etc they just are biopsy freaks with the same conclusion.. Not sure what to do

tinker1948 · 04-26-2008, 04:42 PM

[B][I] I am newly diagnosed with this also. I am on plaquinal. Do you have scleredoma or raynauds also. I was diagnosed 12 years ago but new rhuemy thinks I have MCTD or UDCTD. He is not very helpful in explaining things.

katmuskie · 04-26-2008, 07:31 PM

Tinker ***Thanx for replying !! This is a very frustrating thing. I have (so I've been told) Scleroderma & Polymyostis but they say this is all part of my MCTD. I just had more CT's last week and it appears as if the scar tissue on my lungs and on my heart are progressing.. They have had me on all types of meds (it feels like ALL) . It kind of gets to a point to where do I draw the line and just let it runs its course. or do I try different types of treatments. There is 1 that they would like me to try, My insurance wont pay(,they say it is experimental ) it is PHOTOPHERESIS. it's an anti cancer treatment and what I've read and been told I'm not sold on it but they say they are getting good results with it. I tried Plaquinel and several other anti malaria meds but it didn't help. and yes to the Raynauds. Alot of it you just get used to. The raynauds is your blood vessels are constricting and your fingers turn purple and are freezing it's worse when you are cold so you learn to wear long sleeves. I've gotten to where I just wear sweat suits(the heavier ones) with pockets. Don't go out in the sun and if you feel tired you NEED to stop and rest even if it is for just 15-30 min(does help) If you work you need to let your boss know what is going on so they can work with you. I'm very lucky and my boss probably knows and cares more than most of the Docs I've seen.If you smoke you HAVE to stop.Not all MCTD affects everyone the same but it is ALL BAD. I have learned alot since my plea for help and I am truly grateful for your reply . Maybe we can learn from each other. Kat