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Brand new to this. Diagnosed with MCTD, need help

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Hello Greypilgrim


Best wait until you see your rheumatologist in 2 weeks but the good thing is you are already educating yourself so you can make informed decisions with them.


My disease (diffuse scleroderma) was sudden and rapid, consequently I was put on mycophenolate 2 months after diagnosis even though I had NO internal organ involvement. They were wanting to prevent more symptoms arising as well as treating my biggest symptom, skin involvement. Interestingly it did help my skin involvement but I went on to develop internal organ involvement anyway. Mind you I was only on Mycophenolate for about 10 months then used it sporadically then stopped it because of debilitating headaches, an unfortunate side effect.


I took plaquenil (hydroxychloroquine) for I think 3-4 months and noticed a reduction in pain and fatigue, about 20-30%, unfortunately I had stomach pain ranging from moderate to severe so had to ditch it also. I tried it again recently, lower, slower dose etc but same side affect again.


Everyone reacts differently to all of these drugs so you will just have to try them I'm afraid. At least there are immunosuppressants, DMARD'S (disease modifying antirheumatic drugs) and other symptom specific medication to choose from. Although MCTD can't be cured it can certainly be treated.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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