1. < Polymyalgia Rheumatica (PMR)

Is everyone here diagnosed with PMR seeing a rheumatologist?

Posted by traynor4 @traynor4, Apr 22, 2022

My GP has not suggested seeing a rheumatologist. I am wondering if everyone that has been diagnosed with PMR is seeing a rheumatologist? Also, how often does everyone get bloodwork done? I am getting a little frustrated with my Dr.
Thank you!

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reets70 | @reets70 | May 7, 2023
In reply to @milld835 "Thanks. I wish I had a GP. He retired end of Nov. 2021. Prior to this..." + (show)
@milld835

Thanks. I wish I had a GP. He retired end of Nov. 2021. Prior to this he referred me to a Neurologist, who I talk with sporadically and actually saw him in person last week. I think the pain scale while weaning is a good idea, although he didn't suggest that. Just brought it back down to 15 mg. for the last 4 days. Hip flexor pain has started up again, with the right one giving out occasionally. Legs are extremely tired. Nevertheless, it's manageable. My GP blamed my earlier symptons (back in August/September) on old age and the fact that my hand was going numb and looked like a claw. Finally, he sent me for some blood work for RA (because I insisted) and the CRP was 33.6. It's very difficult to get in to see a specialist of any kind here in Nova Scotia, so I guess that's why the Neurologist. I was never diagnosed until January '22. The weaning will continue. His suggestion is 2.5 mg down every couple of weeks. I think this is probably a little ambitious, but will try it. If it's too much, I'll bump it back up a notch. Had blood work done yesterday and it will be interesting to see where my levels are since February. I think the weaning process is very much something which is different for each of us. My life has changed, but at least I've gotten a lot of it back. Pros and cons of Prednisone.

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My CRP was 80! It went down in a matter of weeks to 11, so I know the prednisone worked very fast.

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12345chris | @12345chris | May 7, 2023
In reply to @su8 "artur. Help me out here please. Does PCP cause a firestorm in your legs? I’m a..." + (show)
@su8

artur. Help me out here please. Does PCP cause a firestorm in your legs?
I’m a bit new here and not sure of the symptoms.
Thank you

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Hi you mention firestorm in legs can you explain more please ?

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1 reply
su8 | @su8 | May 7, 2023
In reply to @12345chris "Hi you mention firestorm in legs can you explain more please ?" + (show)
@12345chris

Hi you mention firestorm in legs can you explain more please ?

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For 18 months, 24/7, my legs are on fire stovepipes.
Like tight rubber bands that will not relax that are on fire. Strands of tight something. I say that I am fighting rigor mortise, it HURTS!
I woke up 10/21 and my legs were rubber. Wheelchair for a month, PT and in walker, now use a walking stick in public because I walk like a drunk. At home I use nothing. Still miserable. The drugs which I see EVERYONE is given, are useless. Makes me sleepy, brain fog, constipated. It’s been so long, it is hard for me to explain. If anything sounds familiar, please reply.
Never had any health problems.

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12345chris | @12345chris | May 8, 2023

Usually if its PMR ot affects your shoulders and upper arms too. When I first started this journey however it was only in my inner thighs. In fact when I saw the Doctor
I thought I had a double groin strain. At night I had strange pain like I could feel the blood running in my legs. After 3 weeks this feeling went leaving me with stiffness in my hips. Then 3 weeks later it started in my upper arms and shoulders. You can tell its the muscle and not the joint thats affected. Pted within 4 days removrd all my pain and stiffness.
I was told by my Doctor if it didnt work that fast then it was not PMR..I hope this helps.

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douglwuoregonedu | @douglwuoregonedu | May 9, 2023

Yes. My rheumatologist proved to be the first person fully knowledgeable about PMR.

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12345chris | @12345chris | May 9, 2023

I have.blood tests just before every doctor appointment to review pred tapering.
I only see my doctor but that may be due to me being in the UK.
I work with the saying in my mind
"Too Many Cooks Spoil the Broth" for treatment plans.
Slight inflamation markers were detected on the first blood test

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grammy82 | @grammy82 | May 9, 2023

Hi, I have GCA~~my diagnosis was missed time after time until I suffered the consequences. Personally, for an autoimmune disease, I definitely recommend a rheumatologist. The hospital I went to sent me to an ophthalmologist back in 2019 who put me on 125mg of prednisone (that was a wild ride) to protect my right eye. Then I got on a bit lower dose, after three days of IV pred, along with Actemra...and it took a rheumy. In short... yes, the rheumy for sure. Good luck to you.💞

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cambrose | @cambrose | May 11, 2023
In reply to @gailg "This is good to know about the "normal" blood tests. My pain started 3 years ago..." + (show)
@gailg

This is good to know about the "normal" blood tests. My pain started 3 years ago and I've seen multiple doctors. Steriods (because they thought I had a back problem) really helped temporarily. Finally someone thought maybe PMR but my blood tests were normal so I was told couldn't be it. I am getting better but 3 years is a long time.. Thought about a rheumatologist but wonder if I can do anything at this late date AND my area is booking 6-9 months out.

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Both my PCP and rheumatologist agree that it is possible to have normal inflammatory tests and still be PMR. I think the key is the specific symptomolgy of PMR... Rhuematologist said 1-3 yrs usual course...but some have it for much longer ( I did not want to hear that)........ I am hanging in there , doing the best I can and hope it resolves.....

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2 replies
gailg | @gailg | May 12, 2023
In reply to @cambrose "Both my PCP and rheumatologist agree that it is possible to have normal inflammatory tests and..." + (show)
@cambrose

Both my PCP and rheumatologist agree that it is possible to have normal inflammatory tests and still be PMR. I think the key is the specific symptomolgy of PMR... Rhuematologist said 1-3 yrs usual course...but some have it for much longer ( I did not want to hear that)........ I am hanging in there , doing the best I can and hope it resolves.....

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I have had all the classic symptoms, except of course the blood tests. It was so bad initially that I thought I wouldn't survive. And nobody knew what it was. I have read 1-2 years and was hopeful, then I saw 1-3. It is 3 years next month for me but I am so much better. I am still planning on it going away and hope yours does too.

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grammy82 | @grammy82 | May 12, 2023
In reply to @cambrose "Both my PCP and rheumatologist agree that it is possible to have normal inflammatory tests and..." + (show)
@cambrose

Both my PCP and rheumatologist agree that it is possible to have normal inflammatory tests and still be PMR. I think the key is the specific symptomolgy of PMR... Rhuematologist said 1-3 yrs usual course...but some have it for much longer ( I did not want to hear that)........ I am hanging in there , doing the best I can and hope it resolves.....

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Hanging in there and doing the best you can.....are two of our best friends. We know we manage a disease like this to the best of our ability....but it is still boss. Be kind to yourself !💞

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