Is everyone here diagnosed with PMR seeing a rheumatologist?

Mr. Brown, your journey is very instructional and certainly illustrates how we need to be our own advocates- and sometimes, our own physicians. Yesterday, I had ultrasounds done on my legs trying to find answers about my balance problems and learned interesting things. They looked like they had already been worked on when of course, they hadn't. Looks like I need to tackle a whole other field of medicine. How this is related to PMR, I do not know. Please know that we all share your journey and hope the best for you.

I was referred to a rheumatologist but they are swamped these days so still waiting to be contacted months later.

I have visits with my GP regularly.

My GP referred me to a rheumatologist as soon as she diagnosed me saying he would rule out other auto immune diseases. Also he is familiar with many drugs that she is not. After many many blood tests and X-rays of all my joints he said I had presumptive PMR. He indicated it could turn into something else down the road so he assesses me every 3 months with blood work and physical exam. After 18 months with him it still appears to be active PMR with high ESR and CRP. I developed bursitis in one shoulder and he injects it every 3 months which is a huge help. A good rheumatologist is worth his weight in gold.

I see my primary care doctor, it has worked well. The prednisone helped and she followed my labs once a month and a schedule of prednisone reduction, as long as my labs were good I reduced ( at times difficult) the prednisone.

It took 6 mos of pain to be diagnosed. GP didnt seem to believe me when I talked about my symptoms. He actually made fun of people who use google to diagnose themselves. I finally asked for a referral to rhuematolgist. After blood tests she understood right away and prescribed prednisone... I feel so much better.

Also being treated by rheumatologist. I went to pcp and was seen by his young partner who basically lectured me and feel like two cents. I scheduled appointment with rheumatologist right after that appointment and fortunately could get in the next week to see him.

My PCP instantly diagnosed me with PMR and then bloodwork + relief from prednisone confirmed it. However, that was months ago and I have had no bloodwork since then. Still, I feel I am in good hands as I have access to the doctor through our patient portal. I don't see any need for further consultation at this point.

My PCP sent me to ER where it was diagnosed and put on 20 mg prednisone. The following week saw rheumatologist and he is working with PCP to control pain. It's good your PCP diagnosed it but I would still see a doc who specializes in PMR to follow your ups and downs.

Yes, I am seeing a rheumatologist. He is much informed and experienced than my PCP in treating PMR and giant-cell arteritis conditions. But it also good to have the PCP around.

However, I did have to change rheumatologists. The one I had initially seemed out of their depth when it came to my treatment and more concerned about exerting their authority than the actual health outcomes. Thanks goodness my PCP was around...she actually came to my rescue on getting short-term disability, which, despite my extremely severe case with no hope of being able to work, the original rheumatologist did not want to approve!

I also had to go to the ER while under the original rheumatologist's care, due to improper Prednisone dosage and a lack of appropriate blood test monitoring. Afterwards, the original rheumatologist refused to see me for a follow-up appointment and also refused to implement weekly blood tests to monitor my condition!

At that point, I asked for a "second opinion" and changed rheumatologists. The new doctor is great; for example he approved short-term disability right away, and is also approved weekly blood tests to monitor my condition. This is very reassuring especially as my Prednisone dosage changes weekly as I taper off it with the help of Actemra.

I also went to my primary doctor. It took about five weeks to find out what was going on. I had a rheumatologist for osteoporosis so I called them regarding my pain because my primary suspected some type of disorder they could help with. The rheumatologist ordered X-rays,more labs and a urine test but would not return my calls or give me any information. Finally I asked my primary if she could get the results for me since they used the same lab. Finally, the PA at my primary doctors office called me and told me what they think I might have, PMR! I was just told yesterday afternoon. I am very upset about my rheumatologist experience. I told them I
was in a lot of pain and still nothing!
This pain is the worst I’ve ever dealt with for so long.
I’m trying to be positive but the pain has been unbearable.