Newly diagnosed and confused about the goal

@johnbishop my doctor raised my prednisone dose to 25 mg now. We will see what the morning brings. At the moment my pain level is pretty good. Mornings are usually the worst.
Thanks for the support.

@cj762 On 20 mg, I couldnt make it through the night. Splitting that dose at 4am and 4pm, prevented me having to take more.

God Bless all of you.
I am so grateful to have found you.
I have just taken a blood test for PMR.

@cj762
My experience with excercisr has been that PMR at 80 is the “d…ned if you do etc.” condition. Keeping muscles in the same or static position (e.g.sitting/driving with one leg in the same position for a long time) causes pain from doing nothing, Exercise makes it go away. Overdoing an activity/overuse of a muscle may cause pain which sometimes doesn’t show up until the next day but goes away with rest.

I was diagnosed with PMR in January 2026 by urgent care doctor. The pain came on what seemed like overnight in November 2025. I was prescribed 15mg predisone which seemed to take care of all the pain within a few hours. Since I had no primary care doctor at the time, the internal med dept. at the clinic’s instructions were to take 15mg for 30 days, then taper to 10mg for 30 days, then taper to 5mg for 30 days then stop prednisone at which time I would be referred to a rheumatologist. When I got to 5mg, I began to start having the neck, shoulder, lower back pain especially in morning hours. I began taking Tylenol 650mg twice a day to alleviate pain. I finally was accepted to set up an appointment with a new primary care doctor and my appointment is May 19th. In the meantime I connected through portal and asked to taper to 2-1/2mg prednisone rather than stop at the end of the5mg prescription. At 2-1/2mg, the pain level was more intense so I’m back at 5mg until my doc appointment. I try to stretch neck and shoulders in morning as well as wear a heated neck wrap for a bit.
I’m confused about how much pain to tolerate when tapering. I do have osteoporosis and worry about further bone loss on prednisone. In general my health has been good. I am 78 and I have been going to a gym three times a week fairly consistently to get aerobic and strength training. Seems the movement helps.
I finally asked through the portal to be referred to a rheumatologist but as yet haven’t heard from them and I heard our local rheumatologist department isn’t taking new patients.
Aargh!
I have been reading some of the posts almost daily and found how varied this disease presents as well as treatment for it.

@bbrass You should not have pain as you taper down. You are at the point where your adrenal glands are waking up and it is easy to confuse PMR pain with the pain from adrenal glands not kicking in and getting back to work. This is where your taper needs to be slow. Once you are pain free at 5mg, possibly plan to stay there for 30 days, then drop to 4mg for 30 days, etc. Remember that dropping from 5 to 4 is a 20% drop - which is a big difference at the lower doses. At 10 mg a 1 mg drop is only 10%. I would advise not to rush it. I know you want off steroids but at 5mg and below that is a very small dose.
There is a national shortage of Rheumy's so finding one who is accepting new patients can be difficult. I live in the Dallas area and it is not easy even in this large of a market.

@jabrown0407 Thank you for your input. I have read on this same topic that having some pain while tapering should be expected. I guess it becomes a personal choice. I am on 5mg and still have some pain. Perhaps I’ll try 7-1/2mg and see. When I went from 15 to 10 I had no pain. So I may have to go back to 10???
Again, I appreciate your interest.

@bbrass You might want to read up on adrenal insufficiency and understand that this can be a problem when tapering if your adrenal glands don't want to wake up. There are plenty of Mayo Connect chats on tapering and adrenal insufficiency. You could start right here by using the Search feature.
I'm not sure what the range is exactly but what I do know is that your adrenal glands worked well for decades then steroids came along and put them to sleep. They published somewhere between 3-10mg a day which was exactly what my body needed. I personally hit the pain wall around 4mg and have to go down by 0.5mg after that and very slowly. I even alternately when I wanted to taper. That approach works for me.
Above 10mg you can do just about anything and not have a problem which is why they suggest 5mg tapers to get to 10mg a day. Tapering is part art and part science.