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New PMR patient, wondering if mornings will become pain free someday
Polymyalgia Rheumatica (PMR) | Last Active: Jun 1 11:10am | Replies (120)Comment receiving replies
So....today I met, for the first time, with a rheumatologist in nearby Denver suburb. I liked him very much, and the visit was eye-opening. (Note: I am on 20mg prednisone, and I've split it 15/5 in order to have less painful morning wake ups.). He says this is to be adjusted and explained:
* PMR is like a campfire. It needs to be TOTALLY put out, and needs to stay out or it will smolder back and rage again.
* He says those of us who have morning pain after being on prednisone are simply not taking enough of it (not snuffing it out). He says that when we have the right amount of prednisone (for me we are trying 25 starting today) the fire ought to be out in 10 days to 2 weeks and then start weening by 2.5mg every 10 days to 2 weeks, until we determine the bottom.
* He also prescribed Alandronate, to be taken with water on an early am empty stomach once per week (to stop calcium from leeching from the bones...the drug is mainly for osteoporosis).
* He is skeptical of reports that PMR episodes comes back and thinks those reports are folks who either had extenuating circumstances (i.e another medical issue), never snuffed it out totally in the first place, or have RA.
* He doesn't like splitting dose because then prednisone remains in the body too long and affects adrenal glands
I will report back.
Ted
Replies to "So....today I met, for the first time, with a rheumatologist in nearby Denver suburb. I liked..."
I won't quibble with anything your rheumatologist said. The most important thing is that you have a good relationship with him. Hopefully he is open minded and also listens to you.
I have always had a good relationship with my rheumatologist(s). They were always in my corner and I felt they knew more than me. Sometimes I would ask questions and their answer was, "I don't know." That is an appropriate response because there are many things about PMR/GCA which aren't known.
I'm glad your rheumatologist is aware that prednisone affects the adrenal glands. I agree that you need to take enough prednisone when starting out. As it pertains to the adrenals, sometimes enough prednisone becomes too much and sometimes you need to take prednisone too long.
Extenuating circumstances are probably the norm for most of us rather than the exception.
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Very productive visit. I once asked my rheumatologist if the prednisone goal was 'no' pain or 'tolerable' pain. He said "no pain". This morning I was thinking of an analogy for splitting or not splitting the dose. I came up with the idea of something with 'roots'. Treatment needs to reach the roots or the problem will creep bsck. If your morning dose is not eliminating your pain til the next morning dose, you are likely not taking enough. I, for one, have known other medical issues, but not RA. I have been to two rhematology practices and both Drs prescribed a single morning dose of prednisone. They did not argue about my splitting the dose. At some point in tapering you need to get the single morning dose to eliminate your pain.
Do 'exceptions to the rule' apply in pmr treatment? I guess so, nothing is absolute, black or white, usually grey areas.
I hope your treatment plan works. If I had known my pmr journey was going to last as long as it has, I would have kept better records along the way. I am now keeping notes in a daily planner with BP readings, med dosing, Dr visits and pertinent medical issues. Just a suggestion. I know John, the mentor, suggests noting daily pain level.
Good Luck, suzanne