Leg Pain: 21/2 yrs. of PMR/GCA from 60mg. of... - PMRGCAuk

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Leg Pain

Mgeorge profile image
7 Replies

21/2 yrs. of PMR/GCA from 60mg. of Prednisone down to 1 mg. at present, I’ve had all the side effects come and go. Now with this last month, I developed diverticulitis, slowly receding and bilateral leg pain which is progressing. It started in the knees , but now covers the back of my legs from hip to foot! I can’t stand from a seated position without aids and collapse into a seated position.

My RA says it’s not from GCA not having seen me. I know GCA is a form of vasculitis, could my leg pains ( only back of my legs) be claidication and what should I be doing to improve?

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Mgeorge
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7 Replies
SnazzyD profile image
SnazzyD

Sounds like you need a new doc. I don’t see how they can tell what the cause is without seeing you. It needs to be established whether this is neurological eg spinal, vascular or more mechanical like osteoarthritis or inflammatory like rheumatoid arthritis. As you are on very low Pred, I would have thought that basic blood tests for some of these or even a PET scan (for large vessel Vasculitis) would be a reasonable ask. With new symptoms like these i think that to wave them off is not very professional in my humble opinion.

Mgeorge profile image
Mgeorge in reply toSnazzyD

Thanks, I agree! I’ll see the RA on Monday and see if I get assistance.

PMRpro profile image
PMRproAmbassador

Claudication is pain that develops when walking - it starts after you have walked some distance and is usually in your calves. It stops when you stop walking and then starts again when you walk again. So that is nothing like what you describe.

This

uprighthealth.com/hard-to-s...

might explain it, as might this

chicagoveininstitute.com/co...

Pred doesn't do muscles much good, especially if you also are fairly inactive, and they tend to get weaker over time. That will make it increasingly difficult to stand up. It might be a good idea to speak to your GP about getting some advice from a physiotherapist - they are often better at this sort of thing than the average doctor!

Mgeorge profile image
Mgeorge in reply toPMRpro

You’re right. My pain is always there, sitting or standing. Since I had jaw claudication, I have always wondered how my other vessels were doing. Luckily I have a great physical therapist on call. I swam and biked 3 days a week, til my diverticulitis diagnosis. Once that’s cleared, I’ll be back to the gym . Could RA be appearing now that I’m so low on prednisone?

PMRpro profile image
PMRproAmbassador in reply toMgeorge

It doesn't really sound like RA either. Sounds very muscular/possibly venous - which is the place to start the diagnostic journey.

Mgeorge profile image
Mgeorge in reply toPMRpro

Thank you. Your knowledgeable words are greatly appreciated .

SheffieldJane profile image
SheffieldJane

I really would not be content with my Rheumie’s advice when he hadn’t even seen me. Something major is going on. I would be seeking a specialist in Vascular medicine as a matter of urgency. To me it sounds like Vasculitis. Anyway a new good doctor is called for. We maybe able to recommend one if you are in the U.K. where are you?

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