Raynauds

[aladymo]

I have Raynaud’s syndrome ( hands and feet -numbness too ) are they PMR related in any way ? Or should I check out peripheral vascular disease? Fingers crossed ( yes, I can do it now!) it’s not another disease ( or meds) I’ll be dealing with 😱

[PMRpro Ambassador]

It is an autoimune vasculitis like PMR but the mechanism is very different. Usually if you keep warm it is less of a problem - and I have to say that mine has been loads better since being on pred! No idea why. And it was proper Raynauds - images of my hands graced the wall of Medical Physics in Newcastle as typical cold reponses! My husband used to do the diagnostic cold challenges - and most patients used to say the meds they offer were often worse than the disorder!

[aladymo in reply to PMRpro]

Thank you 😃. Ill check mine out. I get it whether it’s cold or not now - the prednisone has not helped. I don’t get it in my hands anymore but I definitely get in my feet since PMR

[PMRpro Ambassador in reply to aladymo]

Has your blood flow to your legs been checked?

[aladymo in reply to PMRpro]

No. Can rheumatologist do that ? Or GP?

[PMRpro Ambassador in reply to aladymo]

Theoretically the first test, the ankle-brachial pressures index, ABPI, can be done by the GP or even the practice nurse - they measure the BP in your arms and ankles to see what the ratio is, it falls if your ankle pressures are low due to blockages. And you can be referred to the Vascular Lab for further testing - they can use special sorts of ultrasound and see if there are any visible problems.

[Nap1 in reply to PMRpro]

Interesting I’ve had Raynauds for 50 years. The prednisone has helped me too. The vessels have “come to the surface”. No other way to explain. The horrible bruises that don’t go away anymore and when I take my sugar I bleed a lot and fingers are black and blue. But the Raynauds is definitely better. Pèeling a refregerated cuke is still difficult though.

[SheffieldJane]

I had Raynaud’s disease before my PMR diagnosis. Completely white numb finger tips when cold. I don’t think I told a doctor. It went away with Pred.

[Twopies]

I've had raynauds since I was in my 30s. I've been on pred since 09/16; my raynauds is off the charts--I'm so ice cold most of the time I can barely function; it's been that way since going down to 5 mg.. However, I did spend the winter in Florida, and came back to a freezing cold spring. So whether my raynauds is worse due to the weather, the pmr, the drop in pred or just plain old age, I can't say. Just spending a lot of time with a heating pad and woolies.

[aladymo]

Will call today. Maybe that’s causing the terrible cramping in leg too. You’re amazing with your wealth of info. Thanks you 👍

[PMRpro Ambassador in reply to aladymo]

What sort of cramping? When you walk? That goes away when you stop but starts again when you walk again?

[aladymo in reply to PMRpro]

Yes, most of the time. Stretching helps , but it returns.

[PMRpro Ambassador in reply to aladymo]

Pain the calves that starts after walking for a short time and which then disappears when you rest is typical of claudication pain. It is sometimes called the window-shopper's disorder: their legs hurt so they stop and look in the windows so it isn't so obvious.

It is because the blood flow to the muscles is restricted for some reason - there are several - and always needs to be investigated and the cause found. Some can be dealt with, others are more difficult. You need a referral to a vascular department - usually a vascular surgeon but it depends on your local hospital, sometimes there are physicians who see patients.

[aladymo in reply to PMRpro]

Is it PMR related ? Or prednisone ?

“window shoppers “ very clever nickname

[PMRpro Ambassador in reply to aladymo]

It can happen anyway but depending on the cause there is a higher risk of peripheral vascular disease in patients who have had a vasculitis (PMR and GCA are forms of vasculitis). In some cases the pred helps as it reduces the inflammation that damages the inside of the arteries and leads to the narrowing that restricts the blood flow.

[aladymo in reply to PMRpro]

Just called rheumatologist, will go in an hour ! Thank you !!!

[Carrollee]

Hi Aladymo. How are you and how did you get on at rhuematologist or was it a doctor? Just interested in the latest instalment of the "window shoppers disorder". I used to get this long before pmr/GCA. It went away eventually but returned just before GCA diagnosis. Sadly there were no windows to look in when I got it so I used to just stand there looking and feeling like a lemon until it went calmed down. Took ages to walk into town! My friend had reynauds and she was told to always put on her warm gloves before she left the house to keep her hands warm as too late once they get cold. Guess the same would apply for your feet (but try warm shoes on those, may struggle with gloves on your feet 😳). All the best cc 🤗

[aladymo in reply to Carrollee]

Thank you. I never had Raynaud’s in my feet before. Now I get it ! The rheumatologist told me my cramps were not PMR or prednisone related. He recommended I see a vascular dr. ( called my GP when I got home and he will send off a referral.). Now I wait. Heat definitely helps. I bought a hand warmer (amazon) , it’s a lifesaver. I use it on feet too ( and even on groin once everything else is warmed up). 😱

[PMRpro Ambassador in reply to aladymo]

It is equally important to keep your body warm - if the trunk gets cold and core temperature falls then the blood is kept there to warm it up and the limbs suffer. All over warmth is needed. So a warm climate does help!!!!

[Kath567]

I developed Raynauds about a month after I came down with PMR. Yesterday it came on just getting out of bed in the morning. My husband keeps the house cool at night but I was surprised it came on even at 63 degrees. Currently at 13 mg of prednisone.

Hope you get it sorted out and see a vascular specialist for answers.

[aladymo in reply to Kath567]

Thank you. My Raynaud’s is now not affected by cold. It just comes when it feels,like it 😱

[9lives]

Hi yes I suffered with raynauds in the past. Many years back. But Just recently it has showed its ugly head. I’m down to 4.50 mgs pred. Even in the fairly mild weather my fingers go white. My feet are fine though. I was wondering if it’s to do with AA that I’ve just started taking since end of February

I’ve had PMR for nearly two years and not real problem before. It’s reassuring to know we are not alone in this.

Should I get this checked out or just add it to the list next GP visit? X

To be honest I didn’t like the meds they gave me for it all those years back so stopped taking it and just try to keep hands warm.

But I find in the summer with all the air conditioning doesn’t help xx

Maybe move to Florida might help ha ha

Hope you get some relief from it x

Best wishes

Carole

[Kath567 in reply to 9lives]

My rheumatologist just ignores me when I mention it and have shown him a photo of my fingers going white. I get splinter hemorrhages with it in my nail too. It is so random when it comes on, usually in the morning and inside the house. I sure am good with moving to Florida! Snow again today