Anyone else have scleroderma en coup de sabre?

[Smak_art_org]

Hello everyone - finally had a diagnosis of scleroderma en coup de sable this year after eight years under an MS specialist. Visited the dermatologist today who is trying steroid injections to recover the hair on the patches of alopecia on my scalp. My right eye is sunken due to the loss of fatty tissue. Opthamologist shared my images on a WhatsApp group to find answer for me in March. I think mine is quite rare and they've asked if I will take part in teaching sessions. Not sure what treatment is available? Does anyone else have the same diagnosis? Thank you!

[redmaggie]

Hello, I am unable to relate to your experience, but I wish you good luck with getting the right help. It can be a long journey with an unusual condition. Best wishes.

[Christie22]

It’s looks likely that I have en coup de sabre I have indentation in my head leading into the forehead ..I ve already got a diagnosis of UCTD , inflammatory arthritis RA and polymyalgia .I take prednidolone and the dermatologist feels it’s held it back a bit but only happened six weeks ago affected memory , and I kept bumping into things better now I ve adjusted . I had a punch biopsy two days ago and a CT scan for complete diagnosis . Dermatologist took photos and indicated she’d never heard of it a adult ..I believe my rheumatologist and the dermatologist want to continue with the prednisolone and consider methotrexate or another DMARD …my hair is thinning but I have a fringe it helps

[Smak_art_org in reply to Christie22]

Hi Christie - thanks so much for replying. I'm still waiting for the 'official' diagnosis before any treatment is prescribed. Have had steroid injections into alopecia patches on my head which seem to have worked where the scarring isn't so bad. My MS consultant had never heard of it. Dermatologist had but hadn't come across it. I have the forehead indentation and lack of fatty tissue on the right side of my forehead and slightly dropped right jaw. So lovely to find someone else going through the same thing. Sara

[Christie22]

There is a good group on face book linear scleroderma well worth joining …Has anyone mention parry romburg to you just a thought because of your jaw issue …ECDS is rare in adults my dermatologist hadn’t seen it either !

[ECDSLady]

Hi. I was diagnosed with ECDS in 2016 - been on Methotrexate since then and more recently Mycophenolate. I have hair loss and indentations on my forehead and nose. I have had a couple of head MRI’s - the last one showed no changes so I hope it’s settling down now. I see a dermatologist an an ophthalmologist at the Royal Free hospital. ECDS is very rare form of a rare thing and not many medics know much about it. There is an En coupe de sabre face book group which is very good. The charity SRUK also has some good information. I would suggest you research the condition yourself and also Parry Romberg. Best wishes.

[Smak_art_org in reply to ECDSLady]

Thank you so much for sharing and contacting me having bloods this afternoon towards final diagnosis. X