Skin Problems with Scleroderma

Hi everyone

I have posted this question already on the Raynauds and Scleroderma Society forum so I hope you don't mind me asking this question here as well! Inkedup has kindly written a reply but I'm not sure how many other people on that forum have Scleroderma.

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 tofind out whether I 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 and might be important.

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 (I haven't) ! 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 post!

Karen

15 Replies

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  • Hi Karen

    No worries re the long post! You had a lot to report & scleroderma is very complex. No two patients have exactly the same symptoms & all yours may fit the bill.

    The little red blobs in the nail bed could be quite significant & I'm really pleased you are having the capillaroscopy. It's a very easy useful test. Glad you are going to the Royal Free...centre of excellence for scleroderma treatment & research in the UK.

    I can relate to the puffy fingers with tightening skin. Any sclerodactyl features usually appear as the disease progresses but a lot of people don't ever have this. Shiny hands can certainly be a symptom too & pinching is a good experiment. I would say my skin thickened, but the little bit between base of nail & first knuckle is very thin & prone to tearing etc. Have you found a hand cream which suits you?

    I only have a few spots of telangiectasia but did have very tight skin on my face & neck for the first few years. I have to say, I've been lucky enough to see a huge improvement in almost every way. 26 years of scleroderma have now gone by!

    The Scleroderma Society have a free Helpline manned by others with scleroderma...all varieties!

    Let us know how you get on in the next few weeks, especially with any referral to the R.Free.

    All the best,

    Lizat

  • Hi Lizat

    Thanks so much for replying. I am not sure how long my wait for the capillaroscopy will be as my doctor only sent the referral to the Royal Free last Friday. I think they are doing the thermography too for Raynauds.

    I have tried virtually every hand cream on the market and my skin is much worse in Winter. I asked one of the girls at the hairdressers what they used to protect their hands from all the chemicals and she recommended the Body Shop's Hemp handcream and I must say it is very good and does seem to help.

    I am glad you are improving so much. I expect it must feel like a miracle for you and gives everyone else hope.

    I will let you know the outcome from the Royal Free. I have a feeling it will be like all the other diagnoses I have had - not ticking enough boxes for the rheumatologists to for definitely sure that it's one particular disease. Very frustrating but thanks for reassuring me that I'll be in the best hands!

    Best wishes

    Karen x

  • As Lizat said, everyone is different and the symptoms change and evolve constantly it seems.

    I have been diagnosed with diffuse scleroderma. My hands started off as puffy, then I started suffering with ulcers, then they started thickening, both the fingers and the back of my hands. The skin on my fingertips is thin though and very sensitive - I have had to evolve strategies for not knocking my fingertips on anything! Any cuts in that area take ages to heal. The thickening started to spread up my arms, down my legs, up my neck, chest, torso, face. Not very noticeably to start with, it's gradual so you think you're going bonkers! When I say thick, it didn't feel thick, just that you couldn't pinch it as easily as normal skin and some of it felt tight when I stretched. It was spotted though and I started on immunosuppressants and it's much improved at the moment.

    With regards to sclerodactyl, that comes with time. My fingers have started to curl a little, but I now wear splints at night and they are helping to keep them straight.

    I hope that this helps and you manage to get a diagnosis soon. Half the battle is knowing what it is!

    Take care

  • Hi Roamer

    Thanks so much for your reply. It's very interesting hearing how differently it affects people and I too sometimes think I'm going bonkers with it all! I am still awaiting my appointment for the thermography and capillaroscopy which is at the end of November to see if it is Scleroderma or not. It is so frustrating when you get so many different diagnoses by the rheumatologists and then, as in my case, they admit to not knowing what is causing all the symptoms! As you say, half the battle is knowing what it is and that I'm not going completely mad!

    Best wishes

    Karen x

  • No problem at all Karen. Fingers crossed that you get an answer x

  • Many thanks Roamer x

  • Hi KJay

    Have you been to the Royal Free yet or is it very late in November?

    It's interesting that different doctors have suggested various diagnoses. There is something known as Undifferentiated Connective Tissue Disease ( UCTD) Patients have features of connective tissue disease, but not the diagnostic criteria for any particular one. Isn't life complicated!

    As Roamer says, fingers crossed you get an answer. Looking forward to hearing.

    Lizat x

  • Hi Lizat

    Thanks for your message. I go to see Doctor Howell at the Royal Free on 30th November. It's funny you mentioned UCTD as when I last saw my rheumatologist, he said that it was like I had a little bit of lupus, a little bit of psoriasis etc although he didn't use the name UCTD. I expect you probably need a diagnosis for that too! I probably wouldn't tick enough boxes for that either!

    I did speak to Dr Howell as my appointment letter only mentioned thermography and not capillaroscopy but, thankfully, I am having both done. He said that he wouldn't be able to give a diagnosis as I'm assuming that's the rheumatologist's job but my understanding is that he is the best in this area so I'm hoping he will give some indication as to the nature of what he finds. I'm keeping my fingers crossed anyway and he sounded a very nice man!

    I'll let you know the verdict when I've been. Just hoping it's not inconclusive like everything else seems to have been!

    Karen x

  • November 30th isn't so long to wait. Good luck. Kevin Howell is very nice indeed. He talks you through the procedure, which is quite interesting, & will answer questions about it. It's a non-invasive procedure too...always good news! I don't think there are many places in the UK which have a capillaroscoy "machine." Are you seeing a rheumatologist there as well?

    Lizat x

  • Thanks Lizat for your messge. That is very reassuring. I saw Dr Kaul (he is a rheumatologist at the Royal Free) privately at London Bridge Hospital as Professor D'Cruz at St Thomas' thought it might be RA but said it wasn't his area of expertise. Dr Kaul specialises in RA but doesn't think it is RA either. I am due to see him at London Bridge Hospital (funds and time permitting!) the week after I see Dr Howell but I'll have to make sure that he will have the results from Dr Howell by then.

    I did go to an NHS rheumatologist in Bath on Monday. She was the registrar, looked about 12 and proceeded to disagree with everything Professor D'Cruz had said was significant one of which was low Vitamin D levels which she said weren't low at all by their standards! I was exasperated by the experience but sadly not surprised. A pattern it seems repeated in my local hospitals.

    If it turns out to be Scleroderma, I will ask my GPs if I can be referred to a rheumatologist at the Royal Free. They have been very good so far and I'm sure will do so, if it is Scleroderma. I have also seen that there are Scleroderma clinics around the country connected with the Royal Free. There is one not too far from me in Bristol.

    If it's not Scleroderma, then I shall ask the rheumatologist if it is UCTD and see if he is brave enough to give me a diagnosis!

    Karen x

  • Hi Karen,

    I have recently moved to this area (about an hour from Bristol and Bath) I have had a couple of appointments at the Mineral Hospital in Bath, but am unaware of the clinics you talked of. Are you able to let me have further details of the Bristol clinic? I was diagnosed with Systemic Diffused Scleroderma (is that the right way round?) a few years ago and am still trying to get my head around what is happening to my body. I seem to have several other involvements going on.

    Hope you got your diagnosis, it can take ages to get a name, but at least you sounded like it was moving swiftly for you.

    Lynn

  • Hi Lynn

    I'm afraid I haven't been to the clinic in Bristol. I had the capillaroscopy and test for Raynauds done at the Royal Free in London by Dr Howell. I think Professor Denton who works there, although I didn't see him, is one of the country's experts on Scleroderma.

    The tests showed that I had quite bad Raynauds and there were capillary changes. They were described as 'enlarged' and others ' tortuous' although there were no absent capillaries which is indicative I believe of Scleroderma. So it's the same old, same old! There are some anomalies but not enough for a diagnosis of Scleroderma.

    I am due to go the rheumatology hospital in Bath on Thursday to see my consultant for the first time. I'm not sure how knowledgeable they are about Scleroderma. Would your doctor refer you to the Royal Free? There are so few rheumatologists who really understand the disease it is important you find someone you have faith in and that can support you. Not easy I know!

    I'm sorry I can't be of more help concerning the Bristol clinic. Lizat on this site has been very helpful and I'm sure she would be only too glad to give you some advice.

    Best wishes Lynn

    Karen

  • Thanks Karen. It was prof. Denton who finally diagnosed for me. I was exhibit number 1 at a lecture he was giving at Exeter. It was quite a day! I have been to Bath a few times now but have seen a different person each time. The last one I saw seemed very thorough and has given me some confidence. He has even telephoned me at home with some information. The Mineral Hospital seems to have a good reputation, but I don't know how much is in the Scleroderma field.

    Good luck on Thursday. I'm up there again tomorrow for yet more xrays. Shame it wasn't the same day or we could have met for a coffee. Let me know how things go for you.

    Lynn

  • What a shame we aren't there on the same day! I hope it all went okay for you. I know what you mean about seeing different people as a friend of mine goes to Bath regularly for her RA and never seems to see the same person.

    I have only been once and saw a very young female registrar who seemed to trash everything the rheumatologist (Professor D'Cruz of St Thomas' in London who in my opinion is fantastic) I'd previously seen had said (after all what does an older more experienced Professor know?!) so I was not impressed at all. I am seeing the consultant tomorrow so I am hoping the experience might be an improvement!

    Here's to hoping!

    If I like the consultant tomorrow, I am going to request to see him the next time which I think you can do so it might be worth you while trying that especially because of the nature of Scleroderma as well.

    Are you still able to travel to London and see Professor Denton? I know it's good to have a rheumatologist locally but you do need someone who really understands Scleroderma and there don't seem to be many of them about!

    Hope all goes well for you Lynn x

  • Hi Karen

    How are you? What's the latest news on a definite diagnosis?

    Lizat

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