Is everyone here diagnosed with PMR seeing a rheumatologist?

I have seen 3 different rheumatologists. the last one was maybe 6 years ago. I get the feeling that since I am not in a wheelchair I am doing fine. I am on prednisone 2.5 mg per day and that seems to help, but I am still in constant pain and very stiff. I am looking for some relief that I know prednisone would give, but since I am not in a wheelchair my current doctors feel the Rx is just fine.

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.

Hi @jfannarbor, 6 years ago seems like a long time to me since your last meetup with a rheumatologist. You mentioned you are doing fine and are on 2.5 mg prednisone daily that seems to help but you also said you are still in constant pain and very stiff? My starting dose with prednisone was 20 mg which I took in the mornings and within a very short time all my pain and aches were gone for the day. Then when I started tapering down after being on the dosage and my pain and stiffness was under control, the rheumatologist had me keep a daily pain log with pain rated at 1 to 10 with 10 being the worst, along with the dosage of prednisone for that day. This was what I used when tapering down to the next lower level and what my rheumy recommended.

It sounds like your doctor might not be listening to you. Are you able to get a second opinion or see a rheumatologist again?

@tsc, @milld835, @microbe1943 and others may also have some thoughts on seeing a GP vs a rheumatologist for diagnosing PMR.

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.

Hi @jfannarbor, on the proper dosage of prednisone, your symptoms should disappear. If your doctors really think you're doing well because you're not using a wheelchair, that's pretty sad. I agree with @johnbishop. It's probably time to consult with a rheumatologist. You are entitled to a life without pain. We're fortunate that prednisone can make this disease, and its companion disorder, Giant Cell Arteritis, manageable. I wish you the best.

Hi @traynor4 , I don't think you can go wrong seeing a rheumatologist for PMR, based on their specialization and familiarity with autoimmune disorders. After an initial series of lab work, because I had anemia from the PMR and GCA, my rheumatologist asked me to get a monthly CRP which he monitors. It tends to fluctuate since I'm on a lower dosage of prednisone, and I've just increased the dosage twice, then lowered it. I see the Rheumatologist every three months. Good luck.

I was never referred to a rheumatologist. I am now 74 and was diagnosed by my GP in Feb 2020 just prior to lockdown in March. After that most consults were online or by phone for some time. I only heard about involvement of rheumatologists through this forum! Same story for a close friend. I am not in North America but a country with good general healthcare but maybe less access to
specialists other than in major cities or private clinics beyond my financial means.
I went off Prednisone after tapering on 31st Jan 2021 and have managed minor flares since then by myself. After reviewing hours of medical info and a phone discussion with a different GP off the record as there are no exemptions of any kind here, I chose to remain unvaccinated for CV due to having PMR and another pre-existing condition. I am in excellent health, exercise every day and use supplements and OTC meds only.

I've been seeing a rheumatologist for some time. Some of them seem to understand PMR more than others. I think I've finally found a good one. My GP recommended the last one saying he felt they were much better equipped to treat PMR. I have labs done every 2-4 weeks to track progress with CRP and sed-rate; along with basic blood work. It was impressed upon me early on to be sure and get regular exercise. I walk daily and try to get into water fitness classes when they are offered nearby. Good Luck!

I was diagnosed by my PCP and I consulted with a rheumatologist. Did not like his attitude. For one thing the R did not want to work with my PCP. Either he took over or he was not interested. I stayed with my PCP who is bright, responsive, and respectful. My reading of medical literature pretty much validates all the decisions he has made.