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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 being investigated for possible Scleroderma.
  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 the horrible feeling of hardening and hollowing out of my finger tips I must say. This is completely different and much more worrying to me. But then I guess it's a case of better the devil we know?
  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 urgent seeing as I'm already on Cellcept/ MMF. It's the not being sure that's driving me nuts! Thanks for the link to the thread. It's complicated having several CTDs plus eczema - relate to the person who said their psoriasis and Scleroderma seem "at war" during flares.
  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/ Pompholyx is quite common alongside the skin manifestations of Scleroderma? Thanks for your advice and sorry to be a nuisance with too many posts at once. For some reason my iPad isn't coping well with the software so I'm unable to read the text I'm writing or edit it? Finally - should I be getting email alerts for your replies because I've not had any yet? Kind regards, Mat54
  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 Sjogrens is a great mimic. When they ask how it makes me so tired I shrug and say it's tiring squirting moisture all the time and being relentlessly dry. When my husband asked what Scleroderma would involve I told him to feel my fingertips and imagine this possibly happening in other parts - not sure where but definitely in my oesophogus and maybe lungs - so he nods and says "so you're dry as sand in the desert and turning slowly to stone then?". Well that's the worst case scenario of course. It could just stay in my fingertips - but even fingertips are important!
  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 be taking me on because the rheumatologist who diagnosed the Sjögren's has retired. I've moved about a fair bit over the past two years so GPs and rheumatologist have changed and so have my diagnoses. I'm wanting to know if this new symptom tallied with others experiences and, if so, what to do while I wait 7 more weeks to see the rheumatologist and have a nailfold capilliary test at the Ninewells hospital in Dundee. My finger tips have suddenly turned hard an pitted and it is impossible to cut or get under the fingernail tips. They are a strange mix of numbness, itch, soreness and tingle. I'm presently back on the island where I used to reside so I asked my former general practitioner. He was completely baffled but didn't recognise this as Raynauds or Scleroderma related - nor did he think it related to the Pompholyx eczema I keep getting on one finger or to a fungal infection. He prescribed Betnovate ointment to be applied twice daily to all my fingertips for a week and then go back. He studied the worst tip affected with a torch and magnifier and agreed it was bizarre - almost as if my often wrinkled pads are losing tissue and hollowing out inside. I've asked about this on the Sjögren's World Forums and people felt it must be CREST as doesn't correspond with my small fibre neuropathy or eczema or Sjögren's as most people experience it. I am already 3 months into Mycophenolate 2000mg daily (1000mg twice daily rather) and have no adverse effects to date. Bloods all good apart from Creatinine has risen slightly above range recently, RBCs are always very slightly raised as is haemaglobin. Plasma viscocity and ESR are both pretty high as usual for me. CRP also always raised. My main question is - should I carry on using betnovate or desist and wait for 7 weeks to see the rheumatologist, have nailfold test and see how this latest symptom develops? I'm having to type with only one pinky finger and even that is tapping on screen like woodpecker because of hard skin - very uncomfortable and makes my work very difficult and slow! I can't see any sign of redness at all around my nailfolds - just shiny, scaly skin.
  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 started for me five years ago and I'm 54 now. It did affect my hands by turning my fingers white a few times - I was on Methotrexate and Plaquenil at the time. After this I just felt the cold a lot and my extremities would turn patchy red and white - no blues or purples ever. Mostly my Raynauds has only affected my toes and soles during the winter months. My journey has been long to get to where I am now - and I've moved around a lot which hasn't helped. But last year, once off all drugs and steroids, my ANA swung from equivocal to 1:320 with a nucleolar pattern. My ENA panel including Scl70 were all negative. I have very high sed rate and raised CRP - presumed now to relate to the hyperviscocity of Sjögren's. Because I was under neurology already for presumed small fibre neuropathy - the rheumatologist suggested I might have Sjögren's - hence the very positive lip biopsy which confirmed. Meanwhile Raynauds somehow dropped off the list and my rheumatologist retired. I was started, somewhat reluctantly because of the increase Lymphoma risk with Sjögren's, on Cellcept/ MMF. This was 3 months ago now. Since then the Raynauds attacks have increased in the way I have described - just white and red. My finger pads have been increasingly wrinkly and prune like and now my finger tips have turned shiny, hard and pitted and my general practitioner is a bit baffled - he can see and touch these changes for himself. He prescribed Betnovate - which I already use occasionally for the Pompholyx eczema on my fingers. He did not think this new symptom corresponded with Raynauds/ Scleroderma but nor did he think it Pompholyx or fungal related. Meanwhile I am finding this sensation very uncomfortable for typing (tapping sounds and prickling sensation as I type). I can't get under my nails because of the hard skin and pitting. Does this ring any bells? Should I continue using the betnovate as instructed or is this a waste of time - it hasn't helped yet at all?
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