MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
Please let us know what your symptoms are-- e.g., the reason for prescribing quite so much medication. If the symptoms are only pain and fatigue, I'm kind of curious about this-- if you have lung involvement or other potentially life threatening symptoms, then it makes a bit more sense.
Any organ function problems?
I am 60 and work full time, though I have a job that allows me to sleep a lot during the day. Remaining as active as possible is really important, I think. The unknown, random way the symptoms come and go is what drives a lot of us crazy-- sometimes I wonder if some of the damage this illness does is just from the stress of never knowing what symptom will come next or how serious it will get.
MANY people go into remission or partial remission with this illness. 55 seems to be a particularly bad age for MCTD, particularly for women. Some of us here have speculated this has to do with hormonal changes-- I'm a guy and had a few really bad symptoms in my mid-50s, but I also had many years when things were not so bad... generally one of the better outcomes that we see here, though I expect some people go into full remission and just leave the group, but we never find out about it. I've had a lot of luck with CBD oil with small amounts of THC (not smoked cannabis) and low doses of Norco, but both of these are very hard to get depending on where you live and who your provider is. I also stopped drinking alcohol, which I think helped... a friend of mine has lupus and says his rheumatologist believes alcohol is worse for Lupus than the literature would indicate.
Hang in there, please come back and tell us more about your symptoms and how you are doing. --Kat
I am 54 but was diagnosed with MCTD when I was 49. I have been on hydroxychloroquine and folic acid the entire time. I was on prednisone injections for a month or so, then they stopped working. I believe methotrexate and hydroxychloroquine helped me go into remission. As well as, PRAYER. I was pretty sure remission was just not something that happened to those of us with MCTD. There were no flares, it was constant.
I took methotrexate injections for over a year and a half. Worked great with only a day or so of feeling sick. Didn't think I could make it without it. Due to MAC lung, I had to stop methotrexate. I have been moderately pain free, including fatigue for 6 months.
I am told by my pulmonologist that there are more up to date drugs than methotrexate.
Keep trying different medications. I also had to go through a few RA doctors before finding one I could agree with and that cared about my disease.
Prayers for your pain. :)
Mary Ann