Is everyone here diagnosed with PMR seeing a rheumatologist?

It took 5 months to get to see a Neurologist (although I should be seeing a Rheumatologist). This is on my GP as he kept telling me the pain was "old age". After N. diagnosed PMR, went on steroids (Jan. 2022). GP has now retired. No family doctor. Finally met the R. in person last week. Follow-up bloodwork results early next week. Trying to wean off of the Prednisone. In Halifax, getting into the Rheumatology Clinic is not until June or July 2022 and that's on an urgent basis. My PMR started with my first vax, escalated after the second vax and progressed after August 2021 (second vax 10 days earlier). I am in agreement with you not getting the vaccines or a booster. It seems like you're doing very well with the protocol you are on. Let your body do the talking. Cheers!

Thank you so much for your support. I am not an anti vax person but resisted all the pressure from everyone as my body knew not to have it.
All the best with your recovery.

I have been seeing a rheumatologist from the beginning. I see her every 3 months or so (depending on Covid rate in the area) and get bloodwork each time. It has been almost 2 years now for me. Started at 15 mgs of prednisone - am now down to 3mg.

I have been referred to a Rheumatologist. I also am seeing an eye specialist for GCA.

I would strongly suggest seeing a rheumatologist if possible. My diagnosis was delayed because my family practice doctor and physician assistant were not familiar with PMR. I’d beg them to renew my prednisone after I realized it was PMR until I could see the specialist. I also am thankful that my rheumatologist had more experience with how to best taper and we’re keeping up with any new developments.

I saw a Rheumatologist who quickly dismissed me because my bloodwork didn't show inflated numbers which is how they usually diagnose PMR,but I have all the symptoms and can barely move and am in extreme pain when not on prednisone. I am currently being treated by my GP and was diagnosed by my orthopedic Dr. Good luck and hope you find a more thorough Rheumatologist then I did

My first bout of PMR (although I was not told at the time) came when I was in my late 40s and I gave my GP a weird list of symptoms, all of a skeletal/muscular nature. He tried a medrol pack and they disappeared like magic. "Now I know what you have!" he said, but he never told me. He treated me for a year and a half with lessening amounts of pred and the symptoms didn't come back. I lost access to him when insurance changed and never realized what was going on until much, much later. That was one sharp GP.
When PMR resurfaced with different symptoms years later, I spent 4 years with a rheumy who never saw it for what it was. Then found one who did, so go figure.

I have a great rheumatologist and have had my diagnosis confirmed by rheumatologists at both Mayo and the University of Iowa. Best wishes to you.

I have had three rheumy's one who diagnosed PMR by looking at me, of course it took a year of pain and doctors before I saw her. Then the pandemic hit and at my second appointment with her a month later I was the first patient she told that she was stepping back from practicing since her husband was a hospitalist. The next rheumy just shook his head and pushed oral steroids. The third rheumy, the one I have now, keeps saying everyone's PMR is different so little focus on separating PMR problems from other organic problems. That job has clearly become mine.

I refer to the process as peeling the onion and I have had to fight for doctors to pay attention to me. PMR, because so much is unknown, is the perfect problem to hide things. Yes, it is true that PMR does cause problems and some of them are not nice or even easy to live with. However there are other problems like trochanter bursitis which is a common problem with PMR sufferers. It can be easily addresses with guided steroid injections. This is how it might be treated if it appeared in a non-PMR patient. For PMR patients it is often overlooked, not looked for and otherwise lumped in with leg and hip girdle pain. Just take a little more steroids to kick the pain - no thank you. I first self-diagnosed it. Fortunately I had an angel of a hip doctor who immediately treated it - it just took two years to find him and now he is retired.

I am now facing abdominal pain that appears to be caused by tumors. I cannot say how long it took to get a doctor to take a serious look at unusual abdominal pain, actually two ER visits finally did it - if I had only known. I also have unilateral shoulder pain that causes my BP to be 20-30 points higher in that arm and doctors still want to lump it into PMR. I've been tested for blood clots, not that, so back to PMR as the standby cause.

PMR is a journey for sure. I live in Dallas and we have top doctors so it is not for lack of skilled and knowledgeable care.

Am I frustrated, absolutely, but I am not willing to quit seeing doctors. I need the care. It is simply a matter of finding one who will believe in me long enough to make a difference and then pray they are still practicing 90 days later.

@jabrown0407, Thank you for such a great post and sharing a little more about your health journey. Becoming a better advocate for your own health is a must priority for all of us in my opinion. Learning more about our condition, pressing doctors and asking better questions along with possibly listening a little closer by some of us (one of my issues sometimes).

The following site has helped me communicate better with my doctor and care team and I thought I would share it with everyone.

The Patient Revolution - https://patientrevolution.org/hwrdoc