I’m just wondering how old most of you are with PMR

Methotrexate was tried about 10 years ago. Leflunomide came next. There was sulfasalazine and multiple NSAIDs prior to Methotrexate and Leflunomide. That doesn't count the muscle relaxants and the medications for nerve pain. All those medications helped to a certain extent but not as well as Prednisone did.

I have been prednisone free for about 4 years. In 2019, my rheumatologist decided it was time to try a biologic after studying the new research that was happening back then. Actemra was FDA approved for GCA and my rheumatologist said "should work" for PMR.

After 12 years of taking Prednisone for PMR, along with many of the associated side effects from long term Prednisone use, I finally tapered off Prednisone within a year after starting Actemra. I still do a monthly infusion of Actemra with nothing else for pain. I'm not "pain free" but the pain probably is as good as it gets. I don't seem to have any serious side effects from Actemra.

No, but I think I am in remission. I really don't like to take prednisone. I have on several occasions, but I guess it's been a year now since I took it. I stay fatigued most of the time. Haven't been to church in several months, which really bothers me. I was always a faithful member. Are you bothered with fatigue?

66 now. Started symptoms three days before Christmas when I was 63. Woke up one morning and couldn’t walk. Mine has been mostly in girdle area. Thighs esp. with some hip action. Currently at 6mg medrol. Methotrexate and Kevzara. I’ve been up and down on steroids. My rheumatologist says I am not presenting classically and about every six months decides I don’t have pmr at all and puts me on another med. two weeks later I am back on my regulars. Kevzara has been a game changer for me. I’ve been down as low as 4mg of the steroid but turned into a zombie.

I am 70, soon to be 71. I just found out I have PMR a few weeks ago. I have five doctor’s appointments over the next six weeks. I am so glad to have found this group. I am still trying to figure out what to do, what to eat (or not), what exercise is beneficial and when to do it, should I be doing stretches, if so, when and which ones, someone recommended acupuncture. I am just floundering a bit. Haven’t seen the Rheumatologist yet. I am still trying to figure out what time to take my prednisone. Do you take it in the morning, in the evening, 3:00 AM so when you wake up you can move a little?

"I am still trying to figure out what time to take my prednisone. Do you take it in the morning, in the evening, 3:00 AM so when you wake up you can move a little?"
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The entire dose all in the morning when you wake up is what is recommended. However, pain will probably determine when you actually take prednisone. The pain will likely change over time so then you can adjust the time you take prednisone.

When I was first diagnosed with PMR, the pain would routinely wake me up at 3 a.m. and I couldn't go back to sleep. Since I needed to be ready for work at 7 a.m. I took prednisone at 3 a.m. That way, the pain was under control and I was ready for work at 7 a.m.

Eventually, I discovered that a split dose worked better. If my total dose was 25 mg for the entire day, instead of taking it all in the morning, I would split it up. I took 20 mg in the morning and 5 mg in the evening. The advantage of doing the split dose was I didn't have the 3 a.m. pain that woke me up. I took the first part of my dose whenever I woke up usually at 6 a.m. on work days but 8 a.m when I didn't need to go to work. I usually took the evening portion of my prednisone dose at about 7 p.m.

After a number of years, I was able to sleep an entire night uninterrupted by pain. It didn't seem like I needed a split dose anymore. Then it was recommended that I take my entire dose in the morning when I woke up. I was on a lower dose of prednisone by that time --- closer to 7 mg.

Hello @jsteck, I would like to add my welcome to Connect along with @dadcue and others. In addition to the helpful information @dadcue provided, I thought I would share a few discussions that may help with your questions on what to eat/avoid and exercise.

-- PMR Diet: Foods to eat and avoid
https://connect.mayoclinic.org/discussion/diet-and-pmr/
-- PMR and exercise: What helps you?
https://connect.mayoclinic.org/discussion/pmr-and-exercise/
Another suggestion I had from my rheumatologist was to keep a daily log of my level of pain when I woke up in the morning and my dose of prednisone. The daily log was helpful over the course of my PMR when tapering off of prednisone.

I was diagnosed with PMR 11 years ago when I was 66yrs old. I still have it as every time I taper to 3mg, I get a flare up and have to go back to 10mg. Very occasional I have managed to get down to 2 1/2mg but flare up soon after. Very frustrating. I have tried the dead slow method, I'v also tried by staying on a comfortable dose for longer periods (2months) before reducing. Nothing works.

I was on Prednisone for about the same amount of time. The dead slow method didn't work for me either. I wasn't able to get down to 3 mg without some assistance from a steroid sparing medication. Have you tried any of those? They are used so that you can reduce your Prednisone dose easier.

I am 67 an was diagnosed in December. On the tapering side of Prednisone and am having morning aches and stiffness

I was 72 when I suddenly felt very unwell with lots of pain all over. The medics were very good at telling me what it wasn’t, which wasn’t any help. Finally just got my answer at 77 and started on prednisone. What a huge relief. I feel a lot better, but still with issues. I rerun to the rheumatologist who has at last given me treatment ( three weeks ago) next week.