This is my first post, just joined today after feeling pretty sorry for myself; a common feature of this disease I experience!
I actually have Mixed Connective Tissue Disease (MCTD) with Scleroderma prominent. I was pretty quickly diagnosed in 2015 after ignoring breathlessness, swollen fingers and Raynaud's for a few months then the inability to walk up stairs, lift myself from a toilet seat and other horrendous experiences led me to the general practitioner's. Initially RA was suspected as my twin sister has this but my consultant confirmed MCTD.
I was prescribed 60mg of Prednisone and 6 treatments of cyclophosphamide as my myositis was really debilitating. The steroids left me stronger, but did come with side affects! However, I was now able to function, get dressed without wincing and play with my young twins, something that I had greatly missed; anything sitting down indoors was fine but I didn't have the strength to carry them, get on and off the floor etc. Sometimes the looks that would come my way as I was the only mum standing up watching jigsaws being done on the floor or not lifting up my toddler if he was crying.
Anyway, I was started on Methotrexate but not only did it wipe me out for days after my dose, but it didn't seem to work on my condition. The steroids have eventually reduced to 5mg, with a top up injection but I am now starting Myfenax (mycophenolate) and desperately hope it has a good affect as I am going backwards. The breathlessness, general shivering aches and tight swollen hands are evident but also the Scleroderma is now on my lower arms and face around my mouth.
This seems like a pretty cruel disease, I know many others are worse, but it's so hard for those without it to understand. Some days I am really wiped out, painfully cold and so worried about the future that it's depressing. But, I try and remember that my treatment so far has been first class and if I could just get the medication right then I will go back to how great I felt after the injections, preferably without the bloated face!