Butterfly rash with systemic sclerosi... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Butterfly rash with systemic sclerosis/Raynauds?

san61 profile image
5 Replies

Hi all,I was diagnosed for sure with scleroderma (limited) and secondary Raynauds in June via nail fold capilliary/thermology testing. Im on hydroxychloroquin,which has helped a great deal with aches and pains,stiffness. Im on Nifidipine for the Raynauds,which this winter is worse than last.

The last few weeks ive been getting what looks like the sle butterfly rash across nose/cheeks. itchy on and off,bit raised in parts. My Mum has sle. So,do I have it a bit or what?

Thanks :)

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san61
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5 Replies

It is possible to have an overlap of two or sometimes more of these illnesses. Have you shown it to your GP? My nurses assures me that people with an overlap tend to have less severe disease.

graygirl1 profile image
graygirl1

I have had the Butterfly rash for many years. I was thought I have Systemic Lupus but the investigations showed that I have Scleroderma. The skin problems can be very trying especially when experiencing a "Flare". I just manage the best way I can and my condition is stable for the time being.

I am not sure I have any words of wisdom to offer other than to say, pop along to see your doctor and hear what he/she has to say. Good luck!

Graygirl1

san61 profile image
san61 in reply tograygirl1

Thanks guys. I havnt shown it to any doc's yet,ive got an appointment in january with my rheumy. If it gets bad i'll go sooner. I havnt worked out any "flares" yet ! Ive probs not had any major ones,touch wood . Keep happy everyone :)

confusedmum26 profile image
confusedmum26

Hi,sorry slightly off subject but do u know how old you have to be to have the nail fold tests. My daughter is 2 and was diagnosed with raynauds at 16 months old,she's had it since birth but no tests have been done as they say she's too young. She's on nifedipine and although her rheumatologist is good I feel like something more should be done?

san61 profile image
san61

To be honest I don't know anything about the age thing,but maybe the capilliaries are not matured enough to make a diagnosis. I do think nifedipine is her best medication for now. :)

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