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Old 04-26-2008, 06:31 PM   #3
katmuskie katmuskie is offline
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Join Date: Apr 2008
Location: Decatur,Tx USA
Posts: 2
katmuskie HB User
Re: MCTD !!! ANY and ALL help will be greatly appreciated !!!!!

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