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About MAT54

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  1. I can't confirm this yet I'm afraid as I've still got six weeks to go until I meet the Vascular Medic for a nailfold capillaroscopy test. But I will ask him about this. I have a very similar mix to yourself but Sjogren's is my most acknowledged CTD and is always active and causes small fibre neuropathy, amongst other things. I have been on Cellcept/ Mycophenolate for 3 months now. It has helped with some things but not with tinnitus, GI problems at both ends, Raynauds - and I have new skin issues. I was previously diagnosed and treated for RA and have Hashimoto's Hypothyroidism and now
  2. Thanks for your reply. I was on Methotrexate for two years for RA (which I turned out not to have). During this time I had no eczema or Pompholyx - but I don't think the MTX can take the credit - rather my longstanding eczema and alopecia disappeared suddenly with onset of menopause. I've also had to take steroids orally and topically for much of my life both for allergies and for autoimmunity. Then Pompholyx restarted up about six months ago - before I began Mycophenolate. It comes and goes, itches like crazy - but it isn't as disabling as the RA type synovitis was and it is nothing like
  3. Thanks Joelf. I don't seem to be having much luck in my search for answers. I did ask my general practitioner but I am on an island for another month with a small population so he was just baffled by the hard fingertips. The Pompholyx arrived at same time as chilblains, extra Raynauds attacks and itchy tingle in fingertips. But I'm getting nowhere with the betnovate and I did phone rheumatology department. They just commented that this is why I'm seeing the vascular med guy at the connective tissue clinic in 7 weeks time. I asked if the date could be moved forward but they said no because non
  4. Do many with Scleroderma also have a history of eczema and alopecia?
  5. Thanks very much. I'm seeing a specialist in vascular medicine who conducted nailfold capilliary tests in UK's second biggest Scleroderma centre in Dundee, Scotland. I did some research this morning and phoned the connective tissue disease clinic where I'm to be seen. The secretary made them aware of what is happening to my hands and the doctor said that this is why I'm now on their clinic list but no room to be seen sooner. And anyway he pointed out that I'm already on Mycophenolate, the main treatment, so nothing more they could do if it is Scleroderma. Please can you tell me if eczema/
  6. What a strange person your wife must be. And the rest. I am new here but have previously been misdiagnosed with and treated aggressively for RA and last year was rediagnosed with Sjogrens - now Scleroderma seems to be making itself known in my hands. If anyone asks why I'm wearing shades on a great day or squinting drops in eyes and saliva stimulants in mouth I explain that Sjogrens means my whole connective tissue system is drying up. When they ask why this makes me dizzy I explain mine is like MS and has gone for my nervous system. When they ask what happened to RA I explain that Sjogren
  7. Thanks Joelf. I've posted again on main forum with tags and more eye catching title. Using side of little pinky to type navigating new forums not easy!
  8. PS I forgot to add that I will be having a nailfold capiliary test in 7 weeks during a rheumatology consultation. I do not yet have any organ involvement but have GERD and gastritis with dry cough and swallowing problems, telangiecstasias on hands and face and Raynauds affecting my hands and feet as well as hypertension plus severe tinnitus.
  9. Hi I am based in Scotland. I was previously diagnosed with RA but last year this changed to seronegative primary Sjögren's - now being tested for Scleroderma. My ANA was 1:320 last year with a nucleolar pattern. My ENA panel was negative. I was rediagnosed with Sjögren's because of sicca symptoms, previous RA history and a 100% positive lip biopsy. I have had some Raynauds episodes since the RA symptoms began six years ago in my hands and feet - but only white to red - no blues or purples. Is this still Raynauds I wonder? I'm under neurology and rheumatology but haven't yet met whoever will
  10. Hi. This is the 1st post here from me. I will add it to the UK forum as I'm based in Scotland. I'm posting mainly to ask about hard skin on fingertips with pitting and lines - a new development for me. I have not yet been diagnosed with Scleroderma but am to have a nailfold capilliary test in 7 weeks time. So far my main diagnosis is primary Sjögren's - diagnosed by lip biopsy last year which was 100% positive. Previously I was diagnosed with seronegative RA and treated quite aggressively for this disease six years ago. I am also Hypothyroid and suffer from Hypertension. Raynauds only start
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