Hi @munchie. It's ironic that you, as a retired GI, would get such a medical runaround. I'm so sorry you've had such a bad experience. It sounds like what a lot of us experience as ordinary folks! I hope you have success with your rheumatologist. I have GCA, and have learned that my rheumatologist is top of the line. Its good that you were your own best advocate and finally got some answers. Good luck with your journey.

Hello @munchie, I would like to add my welcome to Connect along with @artist01 and others. Don't you just hate it when doctors don't listen to what you are telling them about your symptoms. So happy you found a rheumatologist to confirm the diagnosis and get your treatment started. My PMR is currently in remission but the 2 occurrences when it was active I was started at a dosage of 20 mg prednisone. My rheumatologist was up front with me with the goal of tapering off of prednisone as soon as was possible. Took me 3 and half years to taper off the first occurrence and 1 and half years the second time around. My rheumatologist gave me some suggestions on a tapering schedule and then told me to listen to my body and not taper too fast. I kept a daily pain level and dosage log as I was tapering weekly at first but several times change to 2 weeks or 3 weeks on a certain dosage if the pain was too much. I also found that regular exercise really helped when tapering off of prednisone but not if I overdid it.

Here is an article from 2015 that discusses latest advances in PMR – Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica: https://www.practicalpainmanagement.com/pain/myofascial/inflammatory-arthritis/latest-advances-diagnosis-treatment-polymyalgia-rheumatica

Here are a few other PMR discussions you might find helpful:
- Successfully treated for Polymyalgia Rheumatica: https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-my-story/
- PMR Anyone?: https://connect.mayoclinic.org/discussion/pmr-anyone/

Have you thought about or made any changes in diet or lifestyle to try and help your PMR symptoms?

hello munchie. your experience is so similar to many of us, lack of proper diagnosis, and general confusion about the whole thing. Going through this during a pandemic adds a layer of confusion too. John has given you great insights, so I won't repeat what he has so carefully crafted.
I'm in my 1st year of diagnosis ( had symptoms for 3plus months before that), and only down to 9.5 mg. I'm going very slowly, as I had a relapse when I tried going down too fast and started getting Giant Cell Arteritis (GCA) symptoms, yikes no good. I too want to get off the prednisone, as the side effects are not great, but it doesn't seem to be an option as of yet. 1.5-3 years is the course according to my MD.
I can attest to exercise being very important. Take it easy, walking is a great low impact choice. if you can go 20 minutes each day, you'll be doing an hour within a few months. You may benefit from epsom salt baths, magnesium rubs. But you're an MD and know these non invasive techniques.
this discussion group has been good for me, just knowing others are in the same boat, and listening to tips etc.
take care, karinaph

I just had a relapse. I have been on 20mg. For 3 weeks
And I have not improved any. I am so fatigued I can hardly walk across house. Does any one take more than 20mg? I had gotten down to 10 then had this relapse. Does the prednisone ever just stop working?

I am the surrogate patient on this website for my 76 year old husband. He was diagnosed in early September 2020. His treatment started with 10 mg Prednisone, plus Sulfasalazine, Meloxicam. He is also a type 2 days diabetic. The Prednisone caused his glucose level to rise so he had to add insulin. The Melixicam and Sulfasazine were discontinued due to rapid weight loss (172 lbs. to 148 in 9 weeks). Methotrexate and folic acid were added. The pain, swelling and stiffness resumed when he decreased the Prednisone. Last week he had the first of three bi-weekly injections of Cymzia with one injection scheduled after the third. He still has some pain and stiffness, but overall is greatly improved. He also uses Lumigan for glaucoma, prescription antibiotic eye cream, Restasis, B12 and Vitamin D has just been added. He had his first Phizer Covid 19 vaccine last week. I guess the synopsis of this wordy message is lots of meds, effort, patience, and the right doctor.

Thanks to all who responded! I do have a rheumatologist just not for sure he is right one. I couldn't get in to see another recommended until April 12th. I am going for another blood test Monday to check if inflammation is still going up. Thanks for you words of encouragement!! Sue