MCTD is the disease with 10000 faces. By definition it is sle, scleroderma and PM but each case manifests itself differently. I had lupus symptoms first and then PM. It is still debatable if I have any scleroderma symptoms. If I do they are internal....my esophagus, stomach, and intestines.
There is no certainty that anyone with mctd will have symptoms of all 3 or if the disease will morph into one or the other exclusively. PM was the worst for me and almost killed me. However, since it has been controlled (since jan 2006) I have not had any flares and no additional symptoms.
In my case I lost 40 lbs of muscle and was left a quadriplegic. My case was very unusual and very extreme. I have recovered a lot of strength and am completely independent now and look normal. My stength is only about 65% of normal despite 16 months of physical therapy. I work out 4-5 times a week on my own.
I developed raynauds but it seems to be a little better now. Not everyone develops that but it is quite common with mctd or lupus. It can be debilitating but if treated it is just a nuisance. I am a winter adventurer and went snowshoeing in -10F weather this winter and was OK. I definitely have to dress warmer but raynauds is no big deal for most. If it progresses there are meds to alleviate it.
Imuran seems to be working for me. I am down to 8mg of prednisone and tapering at 1mg per month. My doctors considered methotrexate but I am not sure why they decided on imuran as my long term med. Seems like most people do well on it and tolerate it indefinitely. If you have a problem with imuran I understand it is immediately. There were 3 rheumys who collaborated in my early treatment and saved my life.
My PM was prednisone resistant and gamma globulin saved my life but I have not had it since dec 2005. The plan is that imuran will be my long term med and hope to reduce it in the distant future. Things are going well so my doctors are being very conservative which is OK with me.
Let me know if you have more questions and feel free to send me a private message if you want.
Hope you feel better and can get some answers. There are very few doctors who know what they are doing with mctd or any myositis or overlapping tissue diseases.
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