Sticky Blood-Hughes Syndrome Support
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Raynaud's that doesnt react to the cold?

Just a quick rumination. I was diagnosed with raynaud's about 5 weeks ago, at the same time that my legs started tunring purple, joints clicking and aching etc. But am being tested for APS.

Anyway, I have not been 100% convinced by the raynaud's diagnosis, and so put my hand on ice for a couple of minutes. And there was no change in colour. They stayed the same reddy colour that they have been since all this started.

As I understand it, which isnt very well, your fingers should chnage colour in response to the cold with raynaud's? Seems more like some general circulation problem, perhaps arising from APS.

4 Replies

Well many of us do have whats know as Raynauds phenomenon which means we have lots of the symptoms of the disease but perhaps don't have the full blown thing. Im a case in point. I get two or three fingers that go ice cold but the rest stay warm, If I get cold and then warm again I can get really painful hands, especially fingers with pins and needles and they swell up. I also get big welts on my body. So in answer to your question you can have both. Legs turning purple can also be down to a number of things with circulation, pooling or clots. Take photos when you get these attacks so you have something to reference to when you see your Dr.


Thanks a lot. Apsnotfab. What you describe does sound a bit like what I experience. Taking photos to appointment is a great idea. If Ive been walking around - even from waiting room to the doctor's room - then the purple greatly diminishes and I can end up sounding like Im exagerating things. Or even like a hypochondriac, which i think is the initial diagnosis for many people with autoimmune conditions!


If you doctor is testing you, make sure all three tests are done:

Anticardiolipin Antibodies (aCL)


Sometimes referred to as Antiphospholipid

Positive in 80% of cases

Higher Levels = Higher risk of Thrombosis

Lupus Anticoagulant (LA) **


Positive in 30-40% of cases

Cannot be used if patient is on warfarin



This is a newer test, not routinely performed, but occasionally positivite when the above two tests are negative

Also please look at our recommended specialists in pinned posts. Whenever I get a new symptom I photograph it in case it disappears before I get back to the GP.

Also please do make sure the GP tests your vitamin D, B12 and Iron plus a Thyroid test.


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Thanks a lot Mary. They have tested for all three apls and I should get the results this week. I know my B12 is OK but will ask about thyroid and vitamine D. Though Ive been taking vitamine D suppliments and getting quite a bit of sunshine, so should be OK on that I guess. Ive even started eating fish after decades of being a vegetarian.


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