The top of my hands and feet are swollen - PMR?

[krillemy]

I am joining this forum again as I may after all have PMR. I am seeing a Reumatologist tomorrow. He has to evaluate my work capacity for my insuerace company. However he is very well known and the author to all descriptions on autoimmune diseases on official internet sites here in Denmark. Under the description of PRM he mentions that patients upper side of hand and feet can be swollen. Mine are. He also mentions that people can have PMR with normal CRP. This is the very reason why all reumatologist has dimessed my PMR diagnosis - I have normal CPR - so I am hopeful that he will help, and not only test my work capacity.

So how is it with you all? Any swelling? Maybe before prednisolon?

Thanks, one can never be too prepared seeing a doctor

[PMRpro Ambassador]

Hi - and sounds as if you finally have a doctor who isn't wearing blinkers!!!

PMR may include something called RS3PE syndrome - and that can cause swelling in hands and feet. Whether that was what I had or not, I needed a continental size larger shoe for a long time - 38 and wider fitting than my normal 36/37. After starting pred my feet went back to a more normal shape and size though it did take quite a long time and didn't happen fully until I was put on medication for atrial fibrillation which improved cardiac function. Those size 38s are no use to me at all now.

ard.bmj.com/content/64/12/1797

RS3PE can be a sign of underlying cancer conditions in patients with PMR (PMR symptoms can also be due to cancer) so it does need bearing in mind and ruling out.

I have never had a raised CRP - except one day when I was having an episode of atrial fibrillation. The following week it was checked - and back to normal. My ESR has also only once been out of normal range - and of course that could have been due to a cold. It ran at 16-18 over a period of weeks when I was in hospital and having a really bad flare of the PMR symptoms - but that is still within the normal range. However, my own personal normal ESR is in low single figures.

[krillemy in reply to PMRpro]

Thank you! That does sounds exactly like me. Swelling does go down with pred. but not completely and has come back worse after I have been of since a year now. I is subcutaneous (Ultrasound), and the last reumy said there was nothing wrong, no inflammation, and that he did not know what is was and had never seen anything like it. So must be rare?Anyway - I´ll ask tomorrow

If had several CT-CET scans over the past years, all to rule out underlying malignity. hands and feet not included, not even an x-ray....

[PMRpro Ambassador in reply to krillemy]

RS3PE is described as rare - over the entire population it certainly is. One paper quoted something like 7 patients out of nearly 200 with PMR showed it - but I suspect it is more than that. Lots of doctors just won't accept hands and feet can be involved in PMR at all.

[krillemy in reply to PMRpro]

Well-well, you were right. After we came past the initial: It all just in her head.... he concluded that I have PMR eventhough my age and lack of elevated CRP made that controversial in DK. The swollen areas on hand and feet fits the picture. So I will go back on pred. toomorrow.Unfortunately it will be hard to find another doctor as the National Health aut. here wants a high CRP to make the diagnosis. I have some stock though, and I have very few side effect. The doctor is now retiring, but if the effect in the next few day is as I hope, I will have him recommend someone with the same view as him (and you). He also said the same 10-15 % had normal CRP and 10% the swelling. many KPI´s in Europe are in agreement

[PMRpro Ambassador in reply to krillemy]

Result!!!! And they really have messed you about haven't they? What a shame you hadn't seen this guy sooner - how did you find him? Considering it really isn't the largest country with a load of leading medical schools, it is a bit surprising they are dancing so out of step with the rest of Europe, never mind the rest of the world!

[krillemy in reply to PMRpro]

We are in many ways here in Denmark dancing the wrong way even though we are so small! It was my insurance company that send me to him (Dr. Torben Grube Christensen). They have paid me temporary disability pension for loss of work capacity for 3 years, and want evaluate I guess if it´s all in me head. He did start out thinking that, but finally came around after the physical exam. Unfortunately he is retiring and they are hard to find. Ones the evaluation is over I will ask him for a references to someone who shares his view.Took 10 mg this morning, and planing for 15 in the next days - so we see

I really have had so much support here on and off the past years . Thanks you for that

[PMRpro Ambassador in reply to krillemy]

Why we are here - most of us have had a struggle at some point.

[123-go]

Yes, I had extremely swollen hands and feet pre-PMR diagnosis. This subsided when I started on Prednisolone. My hands were particularly painful and I would wake with my fingers curled towards my palms. I was going out only for blood tests at that time and shuffled along in trainers with the laces pulled as far apart as they could go. Delightful!

[krillemy in reply to 123-go]

Thanks - I completely know what you mean

[Hollybee21]

I had a swollen hand when I went to see my Rheumy last September, very painful and could not make a fist. I had a cortisone injection in my thigh and by the next day it was back to normal 😄