Could this be something else other th... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Could this be something else other than raynaud's?

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Hi everyone. I have had raynaud's for about 3-4 years now. Only ever had a problem with cold hands but in thr last 3-4 months it's significantly worse despite using nefedipine at the optimal dose. My right hand swells up and the skin cracks and becomes painful. Lasting a week or so. I was referred to rheumatology for suspect autoimmune disease with a positive ana. I have 2 consultants who suspect lupus but my rheumatologist insits there's nothing autoimmune going on.

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Could it be:

nhs.uk/conditions/erythrome...

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Your hand looks very sore. Even if no other symptoms of autoimmune disease, do look after it with creams and protection from cold and wet. I find surgical gloves helpful.

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Hi i do have other symptoms. It heals up then breaks again. I'm due for iloprost infusions in a few weeks time.

Hi Sophie! I hope I'm not out of line here, but I'm wondering about your fingernails. I've had lines like that on (all) my nails several times. My GP didn't seem too worried about them, she did some blood tests, but ended up blaming them on circulation problems. I just wonder if you've had any more helpful feedback.

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Hi Kakey. I have just finished a 3 day course of iloprost infusions so will see if that helps. I am trying to get an appointment for a nailfold capillaroscopy test. Have you has that done?

Thanks for your reply Sophie. No, I haven't. I've only had a casual diagnosis of Raynaud's from my GP.

I hope your treatment helps, and that you get your capillaroscopy, good luck.

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Hi Kakey. I was diagnosed by my gp about 3 years ago. It was mild then. Only really cold hands. In the last 6 months they got really bad. I thought it was secondary because of the positive ana that's why I thought the nailfold capillaroscopy might be beneficial. X

Definitely does sound like what you need. But the way you've worded it makes me think that you haven't been referred.

Has your doctor seen your nails, specifically I was wondering about your middle finger nail? I had lines like that, but never found out what caused them. My doc wasn't concerned, I don't want to worry you.

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Where I live they don't do it so I need an out of area referral. I asked my rheumatologist about it and he's requested it. So just waiting to hear if its been approved. Everything is a wait isn't it. The gp never mentioned nails. Just my finders swelling up and cracking. My fingernails do turn purple too. X

Oh well hopefully it'll come through for you soon then.

Thanks for your answers, and best of luck.

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Thank you Kakey. You're very kind 😊 X

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