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 | Jun 5, 2023
In reply to @grammy82 "I'm glad to hear you are having some improvement!! I've been on prednisone for three years..." + (show)
@grammy82

I'm glad to hear you are having some improvement!! I've been on prednisone for three years now, and it certainly leaves its mark, but I'd never heard of it affecting the AT... It is an amazing medicine, and like most people...it is a trade-off, and we accept and tolerate the side effects.
I'm sure that is darn sore. Your PT sounds inciteful, and I'm guessing the PT is helping.
I started at 80 mg plus Actemra three years ago because I had lost sight in one eye, and the mission was to save the other. Mission accomplished with the help of a neuro-opthalmologist.
I'm now at three mg per day and grateful!! Keep in touch!💞

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I also have AT, very badly in one foot, and very mildly in the other. It’s been five weeks and the swelling is finally going away. I feel like I’m between a rock and a hard place, not knowing which doctor should I see, rheumatologist, foot doctor or internist. They all tell me different things. This all started when my rheumatologist tapered the methylprednisolone from 6 to 4mg. I’m almost afraid to taper it again.

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2 replies
etphnhome | @etphnhome | Jun 5, 2023
In reply to @johnbishop "Hi @traynor4, My primary care doctor referred me to a rheumatologist based on my pain symptoms...." + (show)
@johnbishop

Hi @traynor4, My primary care doctor referred me to a rheumatologist based on my pain symptoms. I think some GPs are more familiar with PMR but a rheumatologist is the specialist with the training. Here's a little info on the subject.

"Should I see a rheumatologist for polymyalgia?
You may be referred to a rheumatologist if there's any doubt about the diagnosis or if there are complicating factors. This could be if the symptoms don't improve with steroid treatment or if you have side effects from the treatment." --- Polymyalgia rheumatica (PMR) | Causes, symptoms, treatments: https://www.versusarthritis.org/about-arthritis/conditions/polymyalgia-rheumatica-pmr/

I didn't have monthly lab tests after being diagnosed with PMR but I think a lot depends on how your treatment with the prednisone is going. There is another discussion on the topic you may want to read through to learn what others have shared -- New to PMR - Are Monthly Labs and Check-ups normal?: https://connect.mayoclinic.org/discussion/doctor-schedule/

If I didn't have confidence in my GP I would definitely seek a second opinion or a referral to a rheumatologist.

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True, but unless the right dose of Prednisone is given in the first 3-7 days and all or most all pain subsides it might not be PMR, that is what I gather from Rheumatologist anyways. PMR and the use of Prednisone are widely known. The FDA approved a Biologic for PMR in Feb 2023. It will be interesting to see how that is dispensed as more people with cfm'd PMR are prescribed. It's early but auto-immune diseases are getting lots of new approvals, so stay positive everyone. Pain stinks!!!!!!!!

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etphnhome | @etphnhome | Jun 5, 2023
In reply to @reets70 "I also have AT, very badly in one foot, and very mildly in the other. It’s..." + (show)
@reets70

I also have AT, very badly in one foot, and very mildly in the other. It’s been five weeks and the swelling is finally going away. I feel like I’m between a rock and a hard place, not knowing which doctor should I see, rheumatologist, foot doctor or internist. They all tell me different things. This all started when my rheumatologist tapered the methylprednisolone from 6 to 4mg. I’m almost afraid to taper it again.

Jump to this post

Your body makes 5-10mg or Steroids (daily)naturally. I'm only guessing but as we age maybe our body-production naturally slows down? My Dr., seemed to think staying under 10mg has less side effects. Less is always safer with any meds. That might be a good question to ask your Dr., though.

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etphnhome | @etphnhome | Jun 5, 2023
In reply to @johnbishop "Hi @traynor4, My primary care doctor referred me to a rheumatologist based on my pain symptoms...." + (show)
@johnbishop

Hi @traynor4, My primary care doctor referred me to a rheumatologist based on my pain symptoms. I think some GPs are more familiar with PMR but a rheumatologist is the specialist with the training. Here's a little info on the subject.

"Should I see a rheumatologist for polymyalgia?
You may be referred to a rheumatologist if there's any doubt about the diagnosis or if there are complicating factors. This could be if the symptoms don't improve with steroid treatment or if you have side effects from the treatment." --- Polymyalgia rheumatica (PMR) | Causes, symptoms, treatments: https://www.versusarthritis.org/about-arthritis/conditions/polymyalgia-rheumatica-pmr/

I didn't have monthly lab tests after being diagnosed with PMR but I think a lot depends on how your treatment with the prednisone is going. There is another discussion on the topic you may want to read through to learn what others have shared -- New to PMR - Are Monthly Labs and Check-ups normal?: https://connect.mayoclinic.org/discussion/doctor-schedule/

If I didn't have confidence in my GP I would definitely seek a second opinion or a referral to a rheumatologist.

Jump to this post

For me confidence is not scientific, a specialist in auto-immune can be helpful. One person I read about couldn't get pain relief at fairly high Prednisone doses for PMR. They sent them for a Pet scan and found a stage 2 tumor on his lung. It caused almost identical symptoms to PMR. Lucky patient doing great today. I'm not suggesting a Pet scan ok. Knowledge is everything when it comes to your health.
🙂

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bradninchgirl | @bradninchgirl | Jun 6, 2023

Back in the beginning, four years ago, I saw my Rheumatologist on a 6 weekly schedule. He ordered blood tests for a few days before the appointment so that the information was available when I saw him. I am now on a "as needed" and once a year scheduled appointment. Am doing well and nearly there, but having to separate the effects of old age from PMR symptoms. At the moment I am concentrating on my sciatic nerve pain which didn't want to go away. It's responding to everyday answers to that problem. Keep smiling, there is an end.

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1 reply
jonnydonny | @jonnydonny | Jun 6, 2023

I understand where your coming last week I had insist on seeing a rheumatologist which I am just waiting to hear from had I not asked I would never have seen one
My doctor never mentioned it to me he was trying to deal with it himself and I wasn't to convinced he had dealt with pmr before when you think about in the UK the stats say that
6 IN EVERY 10.000 PEOPLE
Get pmr how unlucky are we but don't be afraid to ask the question I get my
BLOODS DONE ONCE A YEAR UNLESS ANY CONCERNS
IVE TO GET MY
BLOOD PRESSURE
AND WEIGHT DONE
TWICE A YEAR
GOOD
don't ever be afraid to ask that's what they are there for good luck

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richardab | @richardab | Jun 7, 2023
In reply to @bradninchgirl "Back in the beginning, four years ago, I saw my Rheumatologist on a 6 weekly schedule...." + (show)
@bradninchgirl

Back in the beginning, four years ago, I saw my Rheumatologist on a 6 weekly schedule. He ordered blood tests for a few days before the appointment so that the information was available when I saw him. I am now on a "as needed" and once a year scheduled appointment. Am doing well and nearly there, but having to separate the effects of old age from PMR symptoms. At the moment I am concentrating on my sciatic nerve pain which didn't want to go away. It's responding to everyday answers to that problem. Keep smiling, there is an end.

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Old age and sciatica along with PMR. Thought I was reading my medical history. And throw in Smoldering Myeloma. Best to you.

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mansplainer101 | @mansplainer101 | Jun 8, 2023
In reply to @reets70 "I also have AT, very badly in one foot, and very mildly in the other. It’s..." + (show)
@reets70

I also have AT, very badly in one foot, and very mildly in the other. It’s been five weeks and the swelling is finally going away. I feel like I’m between a rock and a hard place, not knowing which doctor should I see, rheumatologist, foot doctor or internist. They all tell me different things. This all started when my rheumatologist tapered the methylprednisolone from 6 to 4mg. I’m almost afraid to taper it again.

Jump to this post

@reets70 - Is AT Achilles Tendonitis? I got hit with that a few months ago, big time, and my walk was reduced to a shuffle. I have continued to drop my Pred. dosage and have been seeing a physical therapist once a week plus doing the exercises she prescribed daily and I am seeing improvement. I still cannot take a normal stride when I walk, but i would say that I am about 75% along the way to returning to a full stride.

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reets70 | @reets70 | Jun 8, 2023

I believe it is, but do not have a definitive diagnosis. Both of my hamstrings pain as though I ran 100 miles! I can’t take two steps without pain. I’m ow waiting for an appointment with a vascular specialist, after that, I don’t know anymore. My lower back is terribly painful too, and I never had backaches before.this is not for sissies!

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vellen | @vellen | Jun 9, 2023

We had a new doctor to the area and he is the new guy in charge. Where the ER doctor was unable to diagnose me (Tthey had bloodwork done nd teo CTs) this doctor, diagnosed me within 10 minutes but waited for the bloodwork to verify it. I'm happy with him so far and hope it works out since this town is pretty far from others.

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