Ally 1973

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Everything posted by Ally 1973

  1. Has anyone else tried Rituximab? I had two infusions approximately 3 weeks ago but still seem to be experiencing similar symptoms as prior to the treatment.
  2. Hello Lee, I also have Scleroderma but wasn't diagnosed, and probably had symptoms, until I was in my 40's so I imagine you are pretty much an expert in the condition. Obviously sorry to hear you have been suffering with it so long and now have issues swallowing. I have had problems with this for some time and actually avoid certain foods; apples, crusty bread etc., as the feeling of food being stuck also greatly panicked me. I always have to ensure that a large glass of water is available with my meals, the severness of difficulty swallowing depends for me on whether I am responding well to medication. I have recently had two courses of Rituximab are hoping to feel the benefit very shortly. Anyone else had this treatment? Ally
  3. Thank you Joelf for the message. It is really reasurring to know that others understand this condition. I am under great care of specialists but while the mediation is not working I am feeling lousy and sorry for myself! I had to get my beautiful engagement and eternity rings cut off today. I had managed to remove my wedding band some time ago when I could feel it getting tight. It sounds a bit pathetic but I burst into tears looking at the clear difference in my fingers as the unbearable tightness of the rings had left a clear mark on my finger. The now swollen, puffy digits that I have get me down and I wonder if I will ever have my old fingers back? I know it could be worse and need to focus on this. Anyone else had this experience?
  4. Hello all, 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!