I’m Not Responding to Prednisone and I Need Advice

Hello @cliffg26, Welcome to Connect. There are several conditions that mimic PMR. I'm not a doctor but it might be as simple as you don't actually have PMR. Here is more information that explains it much better than I can.

--- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

"If there is not adequate improvement with an appropriate dose of prednisone within one to two weeks, reconsider the diagnosis. If clinical suspicion for PMR remains, consider trialing a higher prednisone dose (usually up to 30 mg) after discussing with the local rheumatology service."
--- Polymyalgia rheumatica (PMR) – look before you leap: https://bpac.org.nz/2023/pmr.aspx

Do you think it might be possible to see if you can get an earlier appointment with the rheumatologist or get on a waiting list in case of an appointment cancellation?

I'm on a list to be called if an opening with the rheumatologist appears. I'll check out the two links in your message. I probably should have also mentioned I'm taking 1,000 mgs of Tylenol every six hours. Thanks.

Not sure if a) you have PMR and b) if you do are you on the correct dosage of Prednisone. Taking so much Tylenol is not good for your liver and usually does nothing for PMR.

I would call the Rheumy, explain your situation and ask for the first available cancellation date. People cancel every day for one reason or another but you need to let them know you are happy to take a cancelled appointment at the last minute. Assuming you are able to do that!

Good morning,
Yes I as well wish there were specialist available whom can get answers and treatment that works. The more we communicate it appears these symptoms are pretty pervasive throughout our age group. My question is where did it come from?
What factors do most share beside being on the backside of 60tys. I don't what to suggest, but it's something to wonder?
The prednisone treatment appears to be a bandage for some and a cure for many...but you still have shitty days. Where chills and sleepiness prevails.
It would appear we have a segment of the population that needs professional evaluation beyond local physicians expertise...but but they appear to be I very short supply and do not follow up on referrals very quickly.
I have heard of pheumatolist seeing people on there lunch breaks...of course I had been referred to that kind of dedicated people.
Looking about it appears we all share a very possible debilitating affection and have our own unique issues which complicate a more desirable resolution.
Yes. We need specialists to meet the demands. But like you we're (stuck in the middle).
I wish you the best, continue to seek answers and more avenues. Don't except, oh we'll get back to you....attitudes.

Excellent advice from John. You need a complete workup to rule out something else which may be affecting you. Hopefully your rheumatologist does this. When I had a persistent lung nodule years ago, my pulmonologist ordered some more exotic tests including immunoglobulin assays, which showed I had Smoldering Myeloma. I share your pain getting to see a rheumatologist, its takes forever in my area.

Did your primary order any bloodwork?

My two cents worth: I was not responding to prednisone for my PMR and got up to 25 mgs in the morning. When I split the dose morning and evening, with the approval of my doc, it made a huge difference. It was a quick fix for me. You might ask your docs. I am tapering successfully (knock on wood) now.

Yes, but I'm not sure how to interpret the numbers. He mentioned the sedimentation rate. It was 81 on 3/23, 65 on 5/4, and 87 on 9/18.

The Tylenol reduces the pain. Without it I would be bedridden.