Could this be scleroderma? What shoul... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Could this be scleroderma? What should I ask from my GP?

LollyAlves profile image
LollyAlves

Hello everyone, I’ve had a strange thing going on with my right hand since before Christmas. Initially my fingers were very swollen and painful to bend. Some ‘sores’ then appeared at the joints and tips, and I sent a photo to my GP surgery (no face to face appointments just now) who diagnosed chilblains - which seemed odd as I hadn’t been out in the cold, and I’ve never had anything like this before. I got some blood tests were normal except my thyroid which was borderline, so the GP is happy nothing’s wrong. But my fingers are still swollen and painful. I’ve been taking care of my hands, wearing gloves, using hand cream etc

I’ve attached a photo from today. They’re not too sore or swollen at the moment (it flairs up and down).

When I googled, the closest images I could find were ‘scleroderma hands’ with the redness around the nails, sores and discolouration, which is why I’m asking you good people. Should I just be patient and wait to see what happens - if it gets worse or goes away, or should I go back to the GP and ask for different blood tests?

I have had an incredibly stressful time recently so feel it’s probably connected.

Thank you so much for your help.

15 Replies

Did your GP do blood anti nuclear antibody test? If they didn’t, push for one. Also, ask for a referral to rheumatology.

LollyAlves profile image
LollyAlves in reply to amc282

Thanks for that. No, I don’t think so, it was just the standard blood tests to check my iron levels, etc I wasn’t sure if I could just ask for a referral to rheumatology if the GP didn’t suggest it, but I’ve been thinking the stress might have triggered some sort of auto-immune thing and I know it’s not always a straightforward diagnosis. My fingers have been bothering me for about 4 months now without showing any signs of getting better, and when they’re sore it’s difficult to use the keyboard for my job (I work in IT). I’ve been away skiing most winters, in really cold temperatures where my hands have sometimes been so cold they’re numb - and never had a chilblain or any issues when they warm up, so it’s weird this has just happened all of a sudden for no reason. But at the same time I don’t want to pester my GP if I’m making a fuss about nothing 😊

amc282 profile image
amc282 in reply to LollyAlves

What does your gut instinct tell you? It might be worth checking as it is only a simple blood test. It should not be too trouble for them. It might be Raynaud’s related. My start with LSSc was similar. Actually, it was part of it. I woke up one morning and couldn’t move my hands. They were red and swollen. They sometimes went white and red. My old GP kept fobbing me off for about a year, but in the end I wasn’t going to be fobbed off. I paid for a private Rheumy consult and was finally being listened to and then referred into the NHS.

Hi Lolly, I would ask for a referral to a rheumatologist. I am sure your Gp is great but this needs a specialist in my opinion. Good luck.

I fought by old GP surgery for 5 years in order to be heard. Even after I got that ANA titre blood test I had to push them to do more investigation. SSc is a rare condition. Despite a GP best intentions, few of them have experience with it. GP are just that, general practitioners. Push for that blood test from your GP and get that referral. If only to put your mind at ease.

Your hand doesn't appear to be the one of a person who suffers from scleroderma.In any case in order to put aside all doubts I suggest you follow amc282's advice and take ANA blood testing.

Thanks everyone for all the replies. I’ll go back to my GP and ask for an ANA blood test, and if that shows anything I’ll ask for a referral to rheumatology.

Vervena1 profile image
Vervena1 in reply to LollyAlves

My daughters hand looked like that and now is scabby and bleeding What did they find?

Her ANA was positive

I get the same thing. It's all part of the scleroderma and raynauds. My rheumatologist prescribed me nitroglycerin ointment to put on my fingers to open up the blood capillaries for the blood to flow. along with my medication that she prescribed , nifedepine, mycophenolate , hydroxychloroquine and baby aspirin. I hope this helps as I know firsthand how painful this can be

Hey! I have had the same thing same time!! My ANA was negative, and mine did go away.. I wonder if it’s COVID related. I have raynauds since a child but never chilblains either... mine cleared up and hands fine now.

LollyAlves profile image
LollyAlves in reply to KLS25

Oh that’s good to know I’m not alone 😀Thank you for taking the time to reply! I’m hoping it’s just down to stress and will clear up on it’s own. I never thought of Covid - although now I think of it, I’ve heard of “Covid toes” which seems to be like chilblains...

I’ve not had Covid as far as I know, but I suppose I can’t rule that out. I’m glad yours are fine now 😊

KLS25 profile image
KLS25 in reply to LollyAlves

Yeh COVID fingers are possible too. I spent so many nights worrying about scleroderma as google always directs raynauds/puffy hands directly there. And I had reflux too which is even more terrifying! But mine have been clear the last month and I’m really careful about keeping my hands warm. Anyway let me know how you get on! Here is a pic of my swollen hand and my sores had gone a bit by then! I wake up every morning scared it’s back...

Pic

I've been diagnosed with long covid fingers and look very similar to yours. I didn't even know I had covid. Having problems getting an effective treatment.

My hands are exactly the same, red around nails been like that for years and I’ve wondered why. I’m just going through tests as spent week in hospital and they think it’s scleroderma and I’m under rheumatology now so push for referral.

HelloMy daughter had Covid and about a month after got sever raynauds - looks like your picture with red sore areas but now has turned weepy and infected.

She also got a positive ANA

Do you know if ana is definitive and dies it show levels of ANA-still waiting to see actual amounts and waiting to see rheumatologist.

I think this was triggered by the Covid virus

Anyone had experience similar ...any advice ?

What are the next steps ?

Thanks you

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