Just tried to answer your post and the server lost it so I will try again.
Sorry you have joined this exclusive club. If lupus is the disease with a 1000 faces then mctd (sle, scleroderma and polymyositis) is the one with 10000. And few doctors, even rheumys have much experience with it.
I have mctd and had a very extreme case. It started slowly but within 5 months PM hit me like a freight train even though I had been taking 60mg of prednisone for 2 months. I lost 40 lbs of muscle mass in a week and was left a quadriplegic who could not swallow. It hit my kidneys (proteinuria), joints, muscles, entire GI tract, and had auto immune induced hepatitis. Almost did not make it and a 5 day, massive iv treatment of gamma globulin saved me. My doctors put me on 150mg of imuran at that time.
Spent 3 months in hospitals and had a remarkable recovery. I had PT, OT and speech therapy for 3 months and have continued to work out on my own for the past 13 months. Although not back to normal I am fully functional and starting to do some of the things I did before. I am 64 but was as fit as a young athlete and skied, hiked/climbed, and played golf in the 70s. I played golf last weekend for the first time in 2 years and intend to ski next winter.
Early diagnosis and effective treatment is important to control this rare and weird disease. I had 3 rheumys consulting as well as a team of specialists when things were at the worst. Still see 2 rheumys and several of the specialists. One of them is a respected clinical researcher at Northwestern U and has been very helpful in setting the right course of treatment. He feels that my mctd might have "burned itself out" but is not willing to test that by stopping my meds. I am down to only 8mg of pred and still on 150 mg of imuran.
Have fun on your windsurfing vacation but overstressing yourself physically or emotionally is not prudent.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's syndrome.
Meds: prednisone (9mg & tapering), 150mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller