MAT54

Sjögren's plus possible Scleroderma - nailfolds and fingertips

3 posts in this topic

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.

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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!

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