PMR questions about prednisone, surgery limitations, pain and more

Hi @johnbishop. Thanks very much for your comments. The "PMR Dosages and Managing Symptoms" is a helpful discussion. My rheumatologist, who I saw for the first time 3 days ago, did mention tapering. However, it seems she is waiting for blood test results ("rheumatologic serologic tests") before taking any action on changing my prednisone dosage. After a week on prednisone (first two days at 10 mg, then 20 mg/day) I am still experiencing soreness and fatigue, although it is much diminished from before I started prednisone. So the question for me right now is if should we INCREASE the dose until the pain and fatigue actually go away. I understand there are serious side effects, and minimizing the total exposure to prednisone is important. Thanks again.

Shouldn't you ask your provider about tapering schedule?

Welcome @drsterny, I certainly think it should be a discussion that you should have with your doctor. I always worked with my rheumatologist on tapering but he offered me a lot of options and suggestions, and also told me it was important to listen to what my body is telling me pain wise. That's why he had my keep a daily log of pain level and dosage when I was tapering. If my pain level was unacceptable for me (above a 2 or 3 on a 0 to 10 scale) then I didn't taper lower and sometimes have to go up a little. Normally if I had to go up, my first option was to go up by half of the previous taper so that I'm still not going back to the previous dose.

Are you working with your doctor or rheumatologist on tapering and managing the symptoms?

I am planning surgery. None of my doctors have said I can’t have surgery, though I need to taper to a low dosage. I am tapering successfully and will be down to 1 or 2 mg in a few weeks.

Ste44, you don't mention the level of pred you are at. I was at 8 mg (methylprednisolone = 10 prednisone) and had to have surgery. Rheumy had me double the day before, nothing the day of and double the day after. I also had discusion with anesthesiologist about how much I was on. She was ready to boost me if I needed it. I didn't. No problem. So talk to all your drs.

From my understanding of PMR, your adrenals are producing antibodies that cause pain. Prednisone helps dampen the antibody effects, but inversely makes you more susceptible to infection.
My questions are:
1. how do you determine the amount of risk with immunity dampened, when you have various invasive medical/dental procedures? ie how much risk when having surgery? how much risk in having a minor procedure, ie podiatrist working on foot? Is there a way to determine how much possible exposure to infection based on quantity (mils /per day) of Prednisone taken?
also, all this talk about Prednisone intake. My question is what is causing this inflammation? where are the tests to isolate the source of problem?
Who is identifying the source/what is triggering the adrenals to malfunction, not just treating the symptoms.

What a great set of questions. I am 76, on my third bout of PMR and have wondered about the same things. That being said, I have had crowns and root canals with no problems, have had vaccines with no problems. I am currently on 2 mg of prednisone. On my first bout of PMR 20 years ago, I did a lot more searching. Now I live better with uncertainty.

@awhilst, Great questions but I don't think anyone really knows. Here's an article with some science based reference links. I think genetics may play a big part.
--- Risk Factors and Possible Causes of Polymyalgia Rheumatica:
https://www.arthritis-health.com/types/polymyalgia-rheumatica/risk-factors-and-possible-causes-polymyalgia-rheumatica

I have never heard of the "adrenals producing antibodies that cause pain". Could you post the reference you got that from so we could learn about it?

Thank you. My Drs told me to taper 1/2 mg every week. I am at 6 now. Planning on first shoulder reversal surgery (bone spurs, cartilage deterioration, crummy pain) in early April. I will talk with the anesthesiologist.