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Scleroderma & Raynaud's UK (SRUK)

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suspected raynauds (pics)

Coffeegalmm profile image
15 Replies

hi guys

for about a year I’ve been noticing my fingers and toes going slightly blue. Pics attached. I had a cal with doctor yesterday who suspects raynauds, I have a blood test lined up to confirm. I’m just really worried that it might not be raynauds as I don’t get the white fingers. What was everyone’s first experiences with raynauds? Worried I have something else…

Does my pic look familiar to yours?!

thanks

Alice

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Coffeegalmm
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15 Replies
Coffeegalmm profile image
Coffeegalmm

My blue nails

Blue nails
Jmrose profile image
Jmrose

I have had it for years. It use to start out white then purple, now it just goes straight to purple. I use nitro-bid cream to help with blood flow and keep my hands warm and away from cold stuff. also daily baby aspirin 81mg. along with my other meds for scleroderma . Good luck

Coffeegalmm profile image
Coffeegalmm in reply to Jmrose

I never go white! Do your nails go blue like mine?

foxglove profile image
foxglove in reply to Jmrose

Would you be kind enough to tell me which nitro bid cream you use? I thought it was only for anal probs but if it helps circulation generally, it would be great!

Jmrose profile image
Jmrose

Not only do my nails turn blue but my whole fingertip turns blue

Coffeegalmm profile image
Coffeegalmm in reply to Jmrose

wow. When you first started getting that, was it that dramatic or did it start off quite small?

Jmrose profile image
Jmrose

Mine started off very slow about 30 years ago, slowly progressed. At first I was able to control it with environment. Moved to a warm area, and now I’m medication and still doing OK.

Coffeegalmm profile image
Coffeegalmm in reply to Jmrose

I’m sorry to hear it got worse but I’m glad to hear you are still doing fine :) I’ve only been experiencing my blue nails for about a year. Feel like it’s happening more often now.. I’ll have a blood test soon to see if I have Raynauds indicators

Looks like raynaulds to me. My fingers turn white then blue. I have had it for 20+ years, and now they often go straight to blue, missing out the white phase. I have also had a recent diagnosis of Systemic Sclerosis, of which raynaulds can often be an early warning sign so I understand..

marie5454 profile image
marie5454

Some of my fingers went white at first and numb for about 20mins, then a blue colour then red. Yours does look like Raynauds, every experience is different so always best to get things checked out.

Dargomom profile image
Dargomom

My first sign of Scleroderma in 2010 was my fingers turning blue from the tip down to the second joint (they rarely turn white). It looks just like your nails. It took 7 years for a correct diagnosis (I have one of the rarer antibodies). I take Nifedipine, baby aspirin and use Nitrobid ointment at the base of my index finger - and my fingers still turn blue when I get chilled (for me, that's below 85 degrees F). I keep Hand Warmers with me ALWAYS and make sure I always have a sweater with me. I bought a used car last year that has a heated steering wheel and heated seats - these are heaven! I got a battery powered heated jacket and wear it all the time in the winter. I use a heated throw (electric blanket), set on high, when I watch TV. Best of luck and be sure to stay warm.

Coffeegalmm profile image
Coffeegalmm in reply to Dargomom

what were your other early signs of scleroderma? I’m 23 and otherwise healthy, I feel like this is all so worrying for me

Dargomom profile image
Dargomom in reply to Coffeegalmm

I had a lot of gastrointestinal issues (severe constipation- so bad that I went to the Emergency Room several times), but no one associated it with my blue hands. I also have Sjogren's (very dry mouth and eyes). About a year before I was accurately diagnosed, my blood pressure (which was always 110/70) shot up to 185/155. I was lucky that I happened to check it.

An excellent website to go to is scleroderma.org - that's where I learned there are more than 2 antibodies they can test for (I tested negative for the 2 primary ones that the Rheumatologist usually test for).

Keep in mind that you can have Raynaud's without another autoimmune disease.

Also, if you have scleroderma, you may not present classic symptoms for the type of antibody - for example, I had an extremely high RNA Polymerase III antibody level. This usually presents with fast onset of extensive skin hardening and gastrointestinal issues. I am at high risk for breast cancer (I had a noninvasive breast cancer before my scleroderma diagnosis) and for scleroderma renal crisis (I didn't know it, but my blood pressure skyrocketing was the start of this). I got everything but the rapid skin hardening - my right index finger is my only problem area. I tend to get a digital ulcer under my nail every now and then that responds well to a month of Bactrim antibiotic.

Don't be scared - do your research and make sure you get the right testing. Most of all - keep WARM!!!

Midgebite21 profile image
Midgebite21

5% of the general population suffer with primary Raynauds. It is not linked with any other conditions and really nothing to worry about. It’s a pain and uncomfortable but and you really just need to learn to manage it.

Secondary raynauds is associated with autoimmune diseases and your GP will probably want to rule out a link to these. Apart from the blue fingers are you having any other symptoms that may point to secondary raynauds. If not then try not to worry.

does it hurt you? When does it happen stress and cold?

Hits my feet more frequently

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