Not Yet Diagnosed - Skin Problems with Scleroderma

Hi everyone

I hope you don't mind me asking a question in your community as I have not had a diagnosis of Scleroderma although I am awaiting an appointment at the Royal Free for a capillaroscopy (hope I've spelled that correctly!) and thermography in order to verify whether I may have it or not.

I have a family history of autoimmune disease and an underactive thyroid and have been told I also had ME, then Sjogren's and Hughes Syndrome and then Rheumatoid Arthritis. Now I have been told I have none of those and the rheumatologists don't know what I have.

I saw Professor D'Cruz, who was fantastic, at the Hughes Syndrome clinic at St Thomas'. He intimated that he didn't think I had Sjogren's or Hughes Syndrome and he didn't think it was Lupus either. He thought it could be RA but felt he wasn't an expert in RA and couldn't give a diagnosis. He did however get very excited about little red blobs at the base of my nails. I didn't pay much attention at the time but it was only later I found out that they were visible nailfold capillaries.

I saw a rheumatologist who specialises in RA and he said that he didn't think I had RA and said he would ask my doctor to refer me to the Royal Free for the capillaroscopy and thermography.

I wanted to ask Scleroderma sufferers about skin symptoms they may have.

I have all the CREST signs and symptoms with the exception of sclerodactyl. On my hands, my fingers get puffy (I have Raynauds) and the skin gets tight but I don't have the tightly curled fingers I have seen in pictures. The skin on the back of my hand is shiny but I'm wondering if this is just age? I can pinch the skin on the back of my hand - just - although not on the fingers, so perhaps this is normal? The main thing I have read about is that the skin in Scleroderma gets thick. My skin, however, is getting very thin like paper and so dry. I have become frightened of picking up objects with an edge (just picking up a roll of masking tape the other day cut my hand) as it seems any little thing like that just slices through my skin and then it takes forever to heal. As my skin is thin, does this rule out Scleroderma?

My final question is that I don't have tight skin on my face. I do have very red cheeks with telangiectasia and they can go very red and incredibly itchy. My chin can also go red and I look like I've been on the bottle! None of the rheumatologists know what causes it but I just wondered if this was something anyone in this forum has experienced.

Many thanks and apologies for such a long question!

Karen

3 Replies

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  • I have multiple autoimmune conditions, inc scleroderma. I have very little in the way of thickened skin and tightness, although have many other problems. Scleroderma is a heterogenous (not sure how you spell it!) condition -this means it affects most people differently, and some people have scleroderma without any skin involvement at all! Most people with scleroderma do however have a positive antibody, either anti centromere for limited (crest) or scl 70 for diffuse scleroderma - it might be worth finding out if you have either of these (they come under the umbrella of anti nuclear antibodies) as a marker for scleroderma. Good luck!

  • Hi Inkedup

    It was very interesting to hear that it affects people differently. I was told I had a high Rheumatoid Factor (I think that's why the rheumatologist thought it might be RA) and a weak positive ANA though not sure which ones as it sounds like there is more than one!

    Thanks very much for replying.

    Karen x

  • I have been recently dx with Scleroderma. My skin is not hardened at this point, but I get what I call a red glove on my left hand when I am having some kind of flare up. When I over do things physically - is when this happens. Every year I have an ECO and PFT test to check my heart and lungs. For some - this is where it will attack and can be deadly. The external signs are of course much easier for the drs to know what is happening, but the internal problems are much worse. My bloodwork is slightly elevated, but symptomatically is what my doc is following. Sometimes your bloodwork may not show any signs you have some kind of AI issue.

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