Newly diagnosed PMR, still in shock - fighting it, sharing, learning

@nlcarl
Hi. No. I tried splitting it one time. The current dose still wasn't resolving pain and symptoms and it didn't work for me,so I went back to AM only (total dose), and up another 5mg. Can't remember if it was from 15 to 20mg or 20 to 25mg when she had me split it. At 25mg for 2 weeks, it finally completely resolved the last of my left shoulder/arm pain.
Since then I've tapered down to 22.5mg and will drop again to 20mg this weekend, as long as no pain/symptoms return.
If you're still having pain at all, is it the PMR type of pain, or any other pain you may have had prior to PMR? If it's PMR type have you told your Rheumatologist? They may think it's ok, I don't know. I do have chronic pain from neck & other spine issues that can cause me that type of pain, but it's very different from PMR pain. Check with your Dr and see what they suggest. I hope you get total relief. Blessings.

I’m sorry this happened to you. I totally understand your pain and shock. It is a hard thing to explain to people who don’t have it, even family members because you can look ok at times. You learn to operate on various pain levels to have a life. Although we are all on our individual journeys, we understand and support each other here. Opinions will vary on many things because no two of us are alike. I have had Poly for 11 years. It is helpful to read everything you can about it, even if some of the information is conflicting, you will understand it better. You will have good days and bad. You will be crabby, you will cry, and you will come here to talk to us. We get it. We are Warriors.

Hi, glad you found us, and welcome! This group is positive, helpful, and will make you feel not so alone in this. It’s hard to have pain no one really sees or understands. Simple things like using the padded bench at a restaurant instead of the hard wooden chair can make all the difference in your comfort level. But these things you will need to speak up for when around others that just don’t think to offer it to you.
Out with friends who will jump out of the car and start walking, not realizing you need a little extra time to get out of the car and get your legs moving to work out the stiffness. My advice is to ask for what you need. Friends and family want to help they just don’t know how to sometimes.
PMR found me in October 2025, I was 65 and had just retired from a very physical job, so I was strong and healthy. I lived on Advil for months until I was referred to a rheumatologist in January 2026. That is when I was diagnosed and started at 20 mg of prednisone. It truly is a miracle drug for this disease. My rheumatologist had me on a timeline of tapering within a year, but that’s not going to happen. He understands and supports my tapering based on how my body feels. Up to this point I have been trying to taper 1 mg a month. Mostly it worked, a couple times I’ve had to bump it back up by a half a milligram for a few weeks and try again at the new dose. That has usually worked for me. Now that I’m at 5 mg. I plan to taper at a half milligram a month from here on out and see how that goes.
It’s really rough in the beginning as you have lots of questions. The tapering can be confusing when you suddenly feel you’re self-medicating when we’re all used to following doctors orders for prescriptions. But you do get to call the shots on how quickly you do or don’t taper based on how you feel. It’s okay! But remember, slow is always best.
On a positive note, I’ve been taking prednisone for eight months now. I just got back from hiking all over East Glacier National Park Montana. The trip had been planned for a year, so I wasn’t even sure I would be able to go. It was the most phenomenal trip! (Gosh that place is beautiful!) I did great with all the hikes and was able to keep up with everyone. My body did not fail me, and best of all, I did not pay the price the next morning. I couldn’t believe how well I did, and how my muscles and joints supported me and didn’t cause me any pain. For the first time since I got diagnosed, I actually felt like my life may get back to normal again. Sometimes when you do too much your body lets you know the next day. At the same time, if you don’t move enough, it will also let you know. There is a fine line you will learn for yourself. But often we don’t know until we try things. You know how they say when life gets hard just keep telling yourself, “this too will pass.” I’m finally feeling that way now, so I want you to know that you will get there too. I wish you a healing journey. And always remember to pop on here if you just need to vent, have a question, or simply read about everybody else’s experience. It all helps. May good health be yours soon.

@boomermeg My goodness, we really do have nearly the same scenario! I am really struggling right now with the shoulder/arm pain. I'm at 30mg. Taking all in morning leaves me in a lot of pain by 3:00am which wakes me up. If I split 5 or 10 off for night, I'm only in about level 3 pain by morning. Mostly in the arms/shoulders, but still inflamed and pain in all the other areas. I can at least function now though. Struggling to sleep if I take 10 at night, can sleep with 5 at night but have much more pain in morning.

I'm messaging my Rheumatologist today for next steps. Encouraged to hear it took 2 weeks for you on your higher dose but the pain finally left. I don't see how I could even start the tapering process until the inflammation and pain have subsided. And can't imagine going higher than 30mg - my blood flow is just slamming with it.

It's all PMR pain. I was blessed to have not had any other chronic body pain before this.

@boomermeg My goodness, we really do have nearly the same scenario! I am really struggling right now with the shoulder/arm pain. I'm at 30mg. Taking all in morning leaves me in a lot of pain by 3:00am which wakes me up. If I split 5 or 10 off for night, I'm only in about level 3 pain by morning. Mostly in the arms/shoulders, but still inflamed and pain in all the other areas. I can at least function now though. Struggling to sleep if I take 10 at night, can sleep with 5 at night but have much more pain in morning.

I'm messaging my Rheumatologist today for next steps. Encouraged to hear it took 2 weeks for you on your higher dose but the pain finally left. I don't see how I could even start the tapering process until the inflammation and pain have subsided. And can't imagine going higher than 30mg - my blood flow is just slamming with it.

It's all PMR pain. I was blessed to have not had any other chronic body pain before this.

@franklinlala - LOVE this. Thanks so much for this wisdom and encouragement. Just what I need right now. Things like this give me hope. Our bodies our so amazing. I feel sad that something gone wrong in my own body is actually hurting my body. Invisible torture. If nothing else, I have new eyes to see there can be so much happening with people we don't realize. I'm already sensitive and empathetic, but even more-so now. Living with more kindness, compassion and grace for everyone. We don't know the struggles. Blessings and love to you.

@nlcarl I am glad you are feeling better. I know many on here will say that they wanted to try and wait this out before taking prednisone but I agree nothing fixes the symptoms quite like prednisone. I was immediately able to get back to my activities. I would read all you can about the side effects of prednisone and realize that it is the devils tic tac. Many have posted articles and a google search will help. I felt lucky to be off in 6 months but even now 5 years later I am taking medications that I didnt before. Good luck on your journey.

@tuckerp hi there … just read your post and interested to see you were off Pred in six months.. I’ve just started this three weeks ago and would dearly love to think I could be Pred free in six months but Rheumatologist saying one year tapering scheme . Did you do a faster taper and if so how did that go ?
Thanks and take care

@tuckerp hi there … just read your post and interested to see you were off Pred in six months.. I’ve just started this three weeks ago and would dearly love to think I could be Pred free in six months but Rheumatologist saying one year tapering scheme . Did you do a faster taper and if so how did that go ?
Thanks and take care