What steroid dosage did you start on? Did you find the right dosage?

I started on 15mg of Prednisone on this past April 29, After 5 days PCP agreed to split the dose to 10mg first thing in am /5mg at dinner. For 26 days the improvement was primarily in the lower extremities only . I only had two or three mornigns without pain and moving arms very freely ( reaching. into cabinet , dressing /undressing) My first consult with a Rheumatologist was just this past Monday May 22, she increased to 20mg total dose only in the morning - i continued to having too long prolonged morning stiffness - so no impact whatsoever of INCREASING to 20mg. And then a terrible flair up on Thursday -pre-dawn !!

I typed this response to my rheumatologist today after feeling much better by splitting the 20 mg dose - 10mg/5mg/5mg. BUT for all in the group - i am also interested in knowing are the goals for the response to Prednisone the same for us all - i put it this way to my Rheumatologist today : "I feel I must emphasize this : If your goal for me ( among your other patients) is to respond to Prednisone and return to the way I felt in March-i.e pre- PMR ( so that i can bound out of bed, feed cat, put hair in pony tail , get dressed and jump in car to go to work ) , I was not there yet with 15 mg and the result for this first 20mg course did not achieve that goal either. Put another way -- would I like the needle to move a little more to the left ? - the answer is yes becuz of the persisting shoulder stiffness only. " So this afternoon - my dose is increased to 30mg - i will split it 10mg/10mg/10mg for the next 5 days . I'd like to start another conversation about going out on Medical Leave of Absence ! - John - can you find the comment someone made about Prednisone half life and repost it ? - thanks

I started on 10 mg and had close to 100 % resolution of symptoms within 48 hours. I had been on a keto diet to fight it, so maybe that helped. however, I have tried to taper down, once getting all the way to 2.5 mg., but I have had flare ups due to stress (moving houses, relationship issues, etc.) and I have found those harder to get under control.

One of the tell-tale signs that it is PMR is positive response to prednisone. Symptoms initially disappear almost completely within 24-48 hours, If yours haven’t, I would wonder what else it might be?

My PMR/GCA symptoms became apparent on January 14, 2023 and I was diagnosed with PMR on Feb 2, 2023.

Before treatment, the body pain was truly unbearable; it felt like I had broken bones 24/7 throughout my body, plus I was continuously nauseous, and had severe night sweats. I lost about 8 lbs before treatment began and was down to 129 lbs at 5'10.5". My CRP levels were measured as high as 347 mg/L and my ESR was measured at 92 mm/hr.

Feb 2, 2023 I began taking 10 mg/day of Prednisone. The joint pain reduced to a much less severe 4-5/10 within a day or two.

Feb 4, 2023 the dosage was increased to 20 mg/day of Prednisone. The body pain was further reduced to 2-3/10, and the nausea and night sweats were gone. However, the pain began increasing later in February. I believe this was due to my adrenal glands slowly shutting down.

March 2 the dosage was increased to 60 mg/day of Prednisone. I had to go to the ER on March 2 due to double vision, and the ER doctors prescribed the 60 mg/day dosage of Prednisone.

April 8 dosage decreased to 50 mg/day of Prednisone. I also began weekly injections of another drug, Actemra (also known as tocilizumab) that supports tapering off Prednisone.

April 8 - June 3 dosage tapered, reaching 10 mg/day on June 3. I continued the weekly injections of Actemra.

Oct 21. Additional tapering, at a much slower rate, assuming no relapses, is projected to result in 0 Prednisone dosage by Oct 21. The plan is to continue taking the Actemra drug for a more extended period.

My family doc didn't diagnose PMR although she and I concurred that we thought that's what I had. She gave me 15 mg Prednisone, which alleviated a lot of the PMR pains. Got in to see a Rheumatologist about 2 months later (which is a miracle, they're in short supply around here), she kicked me up to 30 mg. It was reduced down to 15 mg over time. I'm on 10 now and have added methotrexate to further reduce Prednisone in the future.

Hello @richardab @redboat @tls4 @bfh3 we seem to be in the newly diagnosed group (? Early 2023?) I re-read the post I typed here a while back- I did 30mg 6 days, 27.5 6 days, today is day 1 @ 25mg Prednisone-i remain pain and stiffness free ! YAY -
I think this is a recent, important paper that addressing the question above - Knowledge about the possible patterns of response can only be good -right ?
Rheumatology (Oxford). 2020 Aug 1;59(8):1906-1915. Longitudinal clusters of pain and stiffness in polymyalgia rheumatica: 2-year results from the PMR Cohort Study Sara Muller first author
Results: Five clusters were identified. One cluster represented the profile of 'classical' PMR symptoms (cluster 4 - rapid and sustained)
and one represented sustained symptoms that may not be PMR*. See attached graph for the others.

@tls4 *** what else if not PMR -- this NewYork Times column was one of mystery disease columns - the answer was a FUNGAL infection not PMR
nytimes.com/2019/06/05/magazine/hip-shoulder-pain-polymyalgia-rheumatica-diagnosis.html

Thank you for sharing. I’ll try to read it!

Interesting article and helpful to keep in mind, though this patient did not present as (at least classic) PMR, which would be neck, shoulder girdle, hip girdle, always bilateral. It started in his hand, and the way it progressed didn’t sound much like PMR either to me.

Thank you for the info and posting. I have had fungals looked at for a different issue before I developed PMR. Watch 'The Last of Us' (HBO Max) for an albeit exaggerated take on fungus. Anyways, I'm down to 10 mg after my rheumatologist started me on Methotrexate.

wow, a fungus - freaky.