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.

@shelleyletts
You said it very well! Thanks. I can get crabby sometimes too. So grateful for this community.
Blessings.

I apologize if what I post has already been mentioned to you, but have not been on site for a week or so and just saw this. I post to validate the beginning of your journey through PMR and what I hope will be the end of it.

Like you (other than I am a male) was blindsided with the PMR effect at 68. I struggled through it for about a month before my GP scheduled bloodwork and diagnosed PMR and put me on prednisone (20mg) Instant relief that night. Will not bore you with details of tapering and mistakes made, but I can tell you without a doubt, taper slowly and have a plan. I didn’t do either and tried to get off the drug quickly and it didn’t work. After accepting all advice from this site and rheumatologist tapered slowly and after 18 months became prednisone free. Still some pain but at 70 I can still walk my 3/4 miles a day with wife, play golf and enjoy a relatively pain free existence.

Stay patient and positive. God Bless

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.

@franklinlala
Your comments are very encouraging. I am still alittle confused on the right path with medication. My Rheumatologist put me on Orencia because I didn't tolerate Methotrexate but I am still on 9mg of Prednisone and tapering. I am not sure how much the Orencia is helping but I am so new to this and not sure I am getting the best advice. The last time I asked questions he got testy with me. He is the only one in my area that would except a new patient. I guess I will ride it out and hope my symptoms continue to decrease.

@betsyhase I’ve had great success with Kevzara. Pricy, but my Medicare RX covers all but the annual deductible (then I don’t pay for any other RX’s for the year.
Also, sometimes the taper is too fast. My dr recommended no more than 10% taper and stay on dose pain free for at least 2 weeks. The lower the dose the longer to stay on it doing taper.

@betsyhase I'm sorry to hear you are having trouble finding the right medications to help you. I don't know much about Orencia other than it's used for RA, so I can't comment on it. I know some meds take time before you get relief. Your rheumatologist would hate me! I go in with a list of questions for my doctor every appointment. It's not ok he doesn't have patience with you and your concerns. Hopefully he was just having a bad day, and it won't happen again. If it does, I would definitely call him out on it. It's his job to answer your questions without attitude. You're paying him for a service. He would expect the same if the roles were reversed. This journey has its ups and downs. If anyone deserves to be testy, it's those dealing with PMR. I hope your next visit is better. Write your questions down ahead of time so you don't forget anything. And let us know how it goes, and if the Orencia begins to help. Hope the tide turns for you soon.

@franklinlala
Thanks for your input. You are right. We can all have a bad day. At our first appointment he was informative and understanding. This condition can make me very grumpy too. Hopefully future appointments are better.

@tweetypie13 I am on a 1mg taper of prednisone every month. Slow taper is best to allow the body to adjust. I am also on Kevzara. I am att 7mg of prednisone. I just learned around a third of those with an auto-immune disease have more than one!