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...
Hi. My name is Pam. I've replied to a couple of posts, but basically am new here. So happy to meet you, although wish it wasn't due to this!
I've been widowed since 48, now in my mid-fifties, with 2 grown daughters, one with severe Crohns and fibro, the other with IBD. I was initially dx'd with Raynaud's, fibro, RA, and recently MCTD w/lupus. I had been on Enbrel x 2 yrs, Cymzia X 1, now Humira this past year. I take prednisone occasionally for acute flares, and steroid injections every 6 months in both elbows. They get the worst of this.
I have always been extremely active. About 4-5 years ago, I basically went from climbing up and down the ladder cleaning gutters one day, to having difficulty getting from one room to the next the following day. The TNF blockers helped at the beginning, a lot. But not so much anymore. I'm having a very hard time with pain, fatigue, and now shortness of breath. I'm trying to work, take care of the house etc., but the simplest of things are becoming a struggle! I'm so very tired of picking myself up and dusting myself off, and now I'm not even having the energy to want to try. This last hurricane (live in S FL) with water in the house, fences down, and no power for a week) as well as my beloved mini doxie passing away immediately after almost did me in.
My Rheumy recently wanted to put me on plaquenil, but being that I've only ever had sight in one eye, I can't risk it. I have severe Barrett's as well, so oral methotrexate is out, as are most oral meds. I watch my older daughter, who is on methotrxate injections, not be able to get out of bed for 2 days a week from being so sick from it. I am a fanatic about eating non-processed, healthy food and cook everything myself. Mostly vegetables and fruits, some fish and chicken. I force myself to exercise, going to the gym at least 4 times a week. In fact, no-one would ever guess how bad I feel, as I look great (kinda funny, lol). But inside, I feel as if I'm losing this battle. Right now my ANA and DS DNA are positive.
Any suggestions would be so sincerely appreciated. I'm feeling like a hamster on a perpetual wheel, trying to exercise and keep up, for fear that if I stop, I won't be able to move again. I'm very worried, and it isn't helping.
Thank you so much for letting me get this off my chest and unload. I needed that as well. I don't want to worry my girls. xoxo
Mary Ann
Beth
My last Rheumatologist appointment he brought up a new medication to replace Methotrexate as that one did not work for me either, Azathioprine (probably misspelled). I have asked him to forward a prescription to my family doctor as I am sure that I won't get out of this flare-up without something. My daughter has been dx with MCTD as well, a couple days ago she said she was sore, we wrote it down to growing pains but now I am not too sure - she's fine now.
My frustration lies in that I have 4 autoimmune diseases but I think that I am starting to understand that when I have a flare-up that ALL my diseases act up too and they ALL make me feel awful. But, crazy me, when life should slow down, does it? No, I keep going because I don't want to disappoint those I already have plans set up with or those that may be in a worse predicament than me. SIGH. Sending positive thoughts and vibes your way!