New to PMR

Hello @lcrquestions, Welcome to Mayo Connect. I think it's normal to be a little anxious when you are first diagnosed. Three great questions and you might get a lot of different answers from all of us who have dealt with PMR. I've had 2 occurrences of PMR and the last one was 6 years ago. I kept a daily log with my level of pain when I got up in the morning and the dosage of prednisone for the day. I started at 20 mg for both occurrences and took 3-1/2 years to taper off the first time and 1-1/2 years the second time around. I logged my level of pain between 0 and 10. When it was time to taper to the next lower dose I only tapered when it was 2 or less on my pain scale. Each of us are different though so I don't think it's the same for everyone.

@dadcue started a couple of discussions that I think would be helpful for you while you wait for your appointment with the rheumatologist and hopefully can have a good discussion and ask lots of questions if needed.

-- Comprehensive Overview Of PMR:
https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.: https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/

Do you keep a daily log of your pain and dosage?

Many thanks, John! A log sounds like a good idea ... will do. Thanks, too, for the helpful references!! L.

One thing I’ve learned since being diagnosed last year is that everyone seems to have a slightly different PMR experience. I was diagnosed last August, started on 15 mg and sounds like your experience. I would take prednisone first thing in the am, pain would dramatically subside by about 1 pm and would return overnight. I also had to wait a bit of time to see a rheumatologist as well but not quite as long as you. 1) For me, pain was typical in the am and I didn’t wait to reduce my dosage. My doc told me to reduce to 12.5 mg after about 3 weeks. Then 2 weeks later reduced to 10 mg. My body would take maybe 4-5 days to adjust to the lower dose each time. 2) My rheumatologist suggested splitting my dose roughly half in the morning and half around lunch time. Worked great, lowered my inflammation markers and got rid of the pain. Also for me, it helped with some of the side effects of the prednisone by spacing it out.
Good luck with your PMR journey. My best advice is don’t let it take over your life. Keep moving even when it hurts. Try to do what you can to mitigate any effects of prednisone, through diet, exercise, etc. I’ve been doing that and I feel great. I don’t feel like I have an autoimmune condition.

Thank you @brian@326. Splitting the dose ... makes sense! I am wondering ... are you now entirely off the Prednisone? L.

Sorry that you have joined 'the Club'. This is a great forum with wonderful people who will answer your questions. As @brian326 said, we all have a different experience. I was diagnosed July 2024 with PMR and possible GCA. Started on 60 mg. of pred. for the GCA. What I've learned in this group is that there's no right or wrong taper for Prednisone. You have to listen to your body and symptoms. What I do know is that you don't want to taper too fast. We all want to be off of Prednisone, but tapering too fast can cause set-backs.

A daily log is very helpful for when you see your rheumatologist. (I also wrote down a list of questions, as they popped into my head) I had a whole host of symptoms which I documented. I didn't know if they were caused by the PMR or the Prednisone. What I now know, is that the majority of the symptoms were from the Prednisone--either the drug itself or the taper. I'm am now on 5 mg., thanks to Actemra infusions.

Good luck and don't hesitate to ask questions.

lcrquestions @lcrquestions, Also sorry to hear you have joined the club. I found that my anxiety settled down as the initial dose of prednisone began to work. When inflammation is under control I think we not only feel better physically but also are in a better situation psychologically. I was, for sure. As for the pain and what constitutes a flare once you start to taper was my biggest question. Just how much pain is acceptable in the morning and thru the day after a taper (a drop in daily dose)? That is, of course, subjective but I was given some guidance by people on this site that said if the pain in the morning was a 1 or less, I should give this a chance to work out on its own. In other words so long as I was not going backwards to the pain I had pre-prednisone, I was dong fine. Now that was a recommendation for the tapers I was about to start. I know your question is about the initial dose (not tapers, yet).....My initial dose of 15 mg took away about 99.9% of my pain which I think is the point of the initial dose. I believe the idea is to hit PMR pain hard with between 12 to 20 mg of prednisone to totally get the pain under control. Google "PMR 2015 guidelines" for dosage and tapering protocol (although this is different for everyone but a great starting concept). For me, a starting dose of 15 mg was ideal. It is the best I had ever felt (physically) in my whole life. I noticed within hours my PMR pain dissipating and by week three on the 15 mg I was in a rather blissful state. None of my usual pre-PMR pains (knee, back, neck, hand, etc). Nothing bothered me, I was emotionally quite mellow and physically could do just about any amount of work and not feel pain during or after. I was not amped up with boundless energy like on an upper but just had strength and no pain. For example, I was back to my old self of "overdoing" and split three cords of wood, loaded that in my truck, and then stacked it in my garage in a 1/2 day without any pain during or the following day. Astonishing, but a typical 1/2 day of work for me pre-PMR. However, doing this pre-PMR would have led to body pains of all kinds afterwards even being in great shape. Getting to a pain-free level on the first and primary dose of prednisone seems essential to me. That is your baseline as you start to taper. As I said, some pain/stiffness in the classic PMR spots (neck, shoulders, arms, hips and thighs) is acceptable but not a debilitating level when into the first days of tapering but I think should not be in any pain on the initial dose (my opinion--check with your Dr). I am on my second drop (taper) at the 10 mg per day mark. As with my drop from 15 mg to 12. 5 mg, I felt some pain/stiffness the first week in the mornings that would mellow as the day went. Nothing that I would have taken ibuprofen for nor tylenol for in pre-PMR life. Just knowing it is there. Exercise helps "loosen" me a up a bit and not think about it. Take a tylenol if you think it might help. Relax. Good luck in finding that correct initial dose and following a taper schedule. Share your good fortune and the downs. Cheers.

15 mg per day is working for me. Some days are better than others. I tried 10mg, but the pain came roaring back. Following dietary recommendations, lowering stress, and engaging in very mild activity are helpful.

[heart] Lynne Rienner reacted to your message:

Not off prednisone yet but down to 2 mg/day over last 10 months. I haven’t run into any major obstacles except that when I got down to 3 mg I’ve had to slow to approximately 0.5 mg taper every 3-4 weeks. Everyone seems to be a little different.

I try to take one day at a time. Each of us is unique . wishing you the very best moving forward!!!