Newly diagnosed and confused about the goal

@cj762 No worries, ask any and all. This group is my savior.
Yes, pain and discomfort does move around, my team suggested Migratory Arthralgia.
As for splitting…I read abt it here which coordinates with my dr. Can’t say a good split……maybe try 15 in morn and 10 at bedtime…..trial and error. Me thinks how much pain in the morning? If you have pretty good days on a full dose, then cutting back am and increasing pm makes sense. It will take a day or two to find out. Good luck

My understanding is that the purpose of prednisone is to eliminate pain while the body recovers from the PMR and the PMR "burns itself out." However when questioned, my PCP said prednisone also may have a therapeutic quality too so it's apparently a mixed bag, partly pain relief, partly healing. Whether my understanding is accurate or not, if you are in pain at 15mg a day, it sounds as if you are not getting enough. My PCP started me on 40. I am now on 5 thanks to Kevzara which is expensive but may be a biologic that you will want to consider....hang in there...everyone of us is different, everyone of us responds in a different way to different levels of medication and this is a remarkably helpful and supportive group in trying to help us all understand our own healing.

My GP suspected PMR, and put me on 15mg prednisone. Then I went to a rheumatologist, and they upped to 20. Said that regular docs don't prescribe high enough in the beginning. It took about 48 hours and a felt so much better on the 20! You need to see a rheumatologist for this condition. I take by 7:30 am, with food, or I can't sleep.
Its a journey!

@cwbf

I'm not so sure PMR always burns itself out or resolves on its own. My case was called "refractory" so I doubt it will ever burn itself out completely. All I know is that I don't have relapses like I used to when I tried to taper off prednisone. I don't take prednisone anymore. I'm still being treated with Actemra instead of prednisone.

I agree that Prednisone controlled my pain reasonably well for 12 years. It would be hard for me to identify any therapeutic healing value that I derived from prednisone. I thought my body deteriorated when I took prednisone as evidenced by thin skin, muscle wasting and overwhelming fatigue not to mention the irreversible effect of early cataract formation. I also developed metabolic syndrome that has been difficult for me to reverse with diet and exercise. I still see an endocrinologist 5 years after stopping Prednisone.

In the "short term"prednisone seemed "restorative" but I wouldn't say prednisone healed anything. It restored my inflammation levels to near normal but that was probably all it did. With "long-term", relatively high dose prednisone use for PMR the lasting, and often the "non-healing" nature of prednisone made my side effects feel worse than PMR.

Ironically, it is inflammation that isn't in excess that actually heals the body. Prednisone delays healing and recovery from infections and injuries. That is the paradox --- acute, controlled inflammation is essential for healing, while chronic or excessive inflammation causes damage. Prednisone can, in certain scenarios, impair the body’s natural repair mechanisms, particularly with long term use.

@dadcue Helpful comment. Thank you for it. What an ordeal for you....and for us all

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.

@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.

@tweetypie13 In the majority of cases prednisone should all be taken first thing in the morning and not split. This best mimics the adrenal gland's natural release. Once you have taken steroids straight for two to three weeks the adrenal glands are no longer participating. They have gone "to sleep". Tapering is about slowly waking them up.
If a split is being considered then the lowest needed dose to keep pain free should be the goal of the evening dose. The next goal when tapering is to eliminate the evening dose as soon as possible.
Remember the goal is to mimic the natural rhythm of morning release.

I’ve been lurking in this group and trying to read from what I would feel seems to be more trusted sites on this topic. The Mayo Clinic seems to be one of the best. And this group seems to mimic exactly what I’ve been going through. So thank you. Truly grateful that you were all much braver than I and willing to share.

I feel as though this is something I’ve had for at least a year, likely longer. I struggled for many years on and off with incredible neck spasms, but it wasn’t until they started to go into my hip and the back of my arms that it started to get “different.” And the fatigue became impossible to ignore. Yet I couldn’t sleep at night. I just couldn’t get comfortable. Taking Tylenol and Motrin was part of my daily routine. To the point where I was starting to worry if I was screwing up my stomach.

Earlier last year,I went to my GP who was retiring and said I have this bizarre achiness feel like I’m getting a fever, with excessive tiredness. They’d check me for Lymes, never went beyond that. And normal temp is 97.3 so at 99 I feel like crap but the docs want to see 100.4+.

This really ramped up somewhere around fall of last year 2025. The fatigue became unbearable. I was having trouble sleeping at night. I was pretty sure there was something wrong with our mattress. And also our living room furniture. Everything felt like it hurt my body. And if I did fall asleep and wake up, I was so stiff it was impossible to move.

My favorite response from most people is “well you’re getting older. I have trouble getting up in the morning too.”

Having turned 61, I thought life was finally catching up with me. I had had unlimited energy for decades. It was depressing. I brought into it. I was getting old.

I thought maybe it was the Covid shot though I never had issues in the past. Then we had an early and long enduring winter. Severe cold and snow November through February. Perhaps this was a perfect storm that triggered it all?

It was two visits to a deep tissue massage therapist that I had gone to for years now who said to me, “your body is in muscle spasms from head to toe. And it’s been like that these last couple visits. What’s going on?”

I have Reynauds…that started in the fall. Those microwave bean bags became my best friends, especially after trying to go out with our dogs on days under 50 degrees.

I had managed to mostly hide this from my partner and my friends. For months.

The best way I could handle this was to isolate, though my partner got to experience it all. The real issue is I’ve always been the caregiver. Hiding any weakness or sickness was my thing. If I got sick, I’d take a day and sleep it off. Even covid I seemed to work through.

Until the holidays they all recognize something was going on with me. I could no longer say “oh my neck hurts. Oh my back hurts the usual stuff.”

And most telling was, I could not get up from a table after eating dinner going to a restaurant. Getting out of a car seemed impossible. And getting out of bed became a ridiculous swing of a leg, then a roll to the floor to try and stretch and eventually stand.

I finally on Jan 13 visited new GP. She was pretty perceptive and certainly not dismissive. Blood tests revealed ANA positive. She sent me to a rheumatologist for next steps.
Yet appointments weren’t available until April!
No way I’d make it until then.

Jan 23 she started me on prednisone 10day tapered dosage (40 to start). life changing! Hadn’t felt like this in years. Yay, something IS wrong with me!!!

But once I tapered to 5 it was back to hell.
Managed to get another rheumatologist appointment by feb19. She put me on 15mg 2 weeks. And diagnosed PMR.

I took it for 4 weeks only by mistake. She was expecting me to drop it to 12.5. Oops!
Next visit a month later she dropped to 12.5 and added methotrexate.

After two weeks, I thought I was feeling better, however, a couple things changed. The weather got warmer. Which seemed to help a lot of the cold achy feeling I was having and calm down the Reynauds a bit.
But I developed an incredible neuropathy and a feeling that my face was melting. Like I had just come out of the dentist and Novacaine was wearing off. And the extreme heaviness in my hip and legs seemed to simmer, as did the pains in the back of my upper arms.

So if the methotrexate was working, it had just created other issues. After 5 weeks, I asked the doctor to take me off it. She wasn’t on board. Said my bloodwork was good…
But I don’t feel good!

I hadn’t realized she also expected me to drop the prednisone by 2.5 down to 10. I hadn’t done that. I didn’t feel good at 12.5 at this point.

I see her in 2 weeks. 2 days ago I upped my prednisone to 15 again. And today, I finally feel better again, even though the cold rainy weather has returned. The pins in my arms are gone and I took a walk around the block without issue.

I started acupuncture with some help,but early on I’m not sure what works and what doesn’t. So I dialed that back a bit.

My diet is good. My hobby is playing at-home chef, cooking for friends when I can on weekends. Lots of in season, fresh ingredients, fresh seafood. Not a dessert eater, only if I got out to dinner. (My point is I’ve got a pretty healthy diet.)
I drink wine but not excessively and dialed that to only one or 2 glasses a week if I feel up to it.

Light exercise helps when I can. I take short walks with a neighbor and hired someone to walk our dogs. On leash it’s hard as they’re giant friendly labs that want to pull to see their friends.

Family history: mom and both her parents died of heart disease. My dad I am very sure had this but dismissed as being old. He was later diagnosed with multiple myeloma. Looking back his mgus levels were off well before. It was remembering his gait and getting up from the table that felt way too familiar to me and pushed me to the doctor.

So I get that no one wants to be on prednisone forever. But reading here it seems I am possibly being weaned off it too soon.

And I saw the one question I have: what should I expect?

Leading to:
Should I expect to feel good? When?
Or just tolerate some of this and take Tylenol as needed?
Start on one of the new IL 6 drugs? Should that happen now or after sometime on prednisone? Admittedly I’m not excited about trying something else unless I hear this is a game changer.

How concerned should I be about GCA? My rheumatologist was concerned when I said I get ocular migraines occasionally. Have for many years. My ophthalmologist was not concerned given the infrequency.

How about multiple myeloma. Connection?

I often think this would be easier for everyone else to understand if I said I had lupus. When they tilt their head left and right like my lab does when I talk to him, I just say “it’s lupus-light for older people.” That makes them feel better… [smirk]

Thank you all again for the helpful and open conversations. Appreciate the input.

@mackerman2026 I suspect that they are testing your inflammatory markers. These are not tests exclusively for PMR. There is no test that can "prove" you have PMR. PMR is a default Dx. If you have certain symptoms and they have eliminated other things then they look at PMR as a default. I wish you well on your journey.