Raynaud's Disease: Does anyone know if there is a... - PMRGCAuk

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Raynaud's Disease

Bignorhill profile image
7 Replies

Does anyone know if there is a coneection between PMR and Raynaud's Disease?

I did not use to suffer with Reynaud's but this winter it has been occurring frequently.

One of the systmptom reducers is supposed to be regular exercise but I often suffer straight after doing an 8k run. On Saturday one of my fingers on warming back up throbbed painfully for quite a while, this was after running 9k. Fingers only turned white after I stopped running and was in my car. Sometimes I can just walk outside and my fingers instantly go white, so cannot explain fully what brings it on. I have been indoors all day today and now my fingers have gone white on my left hand.

All I can say is roll on some warmer weather as that seems to be best solution.

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Bignorhill profile image
Bignorhill
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7 Replies
PMRpro profile image
PMRproAmbassador

I think there is some connection between vasculitis in general and Raynaud's but how much association there is with PMR I don't know. It can be secondary a few autoimmune disorders and isn't unusual in connective tissue disorders

I had had Raynaud's for years prior to PMR but I honestly don't think I have had an attack since being on pred - despite thermographic images of my hands adorning the walls of Medical Physics in Newcastle as typical responses to the cold challenge! Can't say I'm sorry! Just walking down the chiller aisle was enough to set it off. My hands are always warm now - passed it on to OH though ;)

hopkinsmedicine.org/health/...

Really it does need to be mentioned to your doctor because at our age it is most likely to be secondary to something else and more likely to get worse which you don't really want. And possibly the PMR diagnosis missed something - it is associated with connective tissue disease and technically PMR affects connective tissue.

pennmedicine.org/updates/bl...

powerwalk profile image
powerwalk in reply toPMRpro

This is bazaar!!! Last week my husband's middle finger, the top half went completely white and freezing cold all of a sudden, then his heart started beating really fast. We didnt know what was going on so went to the hospital but they could not come up with any reason for it!! Said his heart is perfect. Sounds like this but has never happened to him before.

Bignorhill profile image
Bignorhill in reply toPMRpro

The rheumatologist did not say much when I mentioned the Raynauds. I am, though, being sent for a CT PET to check my veins for any sign of Vasculitis and for an MRI scan to check out my back.

I continue to have shoulder and back pain but nothing in my hip area, the Rheumatologist has no explanation for this hence the scans rather than just putting my straight back on Pred which I have not taken since Dec 19.

PMRpro profile image
PMRproAmbassador in reply toBignorhill

Not your veins - the arteries, checking for large vessel vasculitis in the trunk. Good he is getting it in before trying pred - it interferes with the signal. I put a link up to a paper with images the other day:

ncbi.nlm.nih.gov/pmc/articl...

shows what they are looking for

I am sure there is, never had it before, even getting milk bottle out of fridge first thing in morning sets it off.

9lives profile image
9lives

Hi BignorhillI first suffered Raynaud many years ago. And still do now, if I’m in the super market my fingers go white , cos they all have air on on nowadays, and takes ages to get them back to normal. Also if I sit around for a while in the house and the heating is on low then I get cold fingers. My great niece bought me some hand warmers, bless her so they go everywhere with me. I don’t know if there is a connection with PMR, but who knows.

Hope things improve for you x

Q-owl profile image
Q-owl

Hi, I've had PMR for over two years now and reduced to 2.5 mg Pred. Started with Reynaulds early this winter. First noticed when driving, now I can't take milk out of the fridge without a couple of finger tips going white/yellow. Contacted GP and she has arranged my first visit to Rheumatologist. Bloods show just abnormal on lymphocyte count 1.2, Eosinophil count 0.7, and erythrocyte sed. rate 16. It'll be interesting to hear what he says.

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