New PMR patient, wondering if mornings will become pain free someday

Although splitting your dose isn't always recommended, it helped me get through the night relatively pain free. I used to wake up in pain at 3-4 a.m. and I would take my morning dose at that time. This wasn't conducive to a good 8 hours of sleep. When the pain started at 3 a.m. it was impossible to go back to sleep. Prednisone takes a good 2 hours to start working.

When I took approximately 2/3 of my total daily dose in the morning and reserved 1/3 of my dose for later in the evening, I had better overall pain relief for an entire 24 hours. I could sleep the entire night and I wouldn't wake up in pain at 3 a.m. People have posted that spitting their dose works well for them.

It doesn't need to be the 2/3 and 1/3 split like I did. However, the biggest portion of the total daily dose should be in the morning with the smaller portion in the evening.

There is also the belief that the entire dose should be taken in the morning. You can always switch back to taking your entire dose in the morning if spitting your dose doesn't work.

Every case seems to be different. I have been dealing with PMR since late 2020. You may want to deal with some pain instead of increasing Prednisone. In the last year I have been dealing with "thin skin" where you bruise very easily, and your skin tears with just a little brush or scrape. PMR doctor says it is the Prednisone. Looking into taking Methotrexate, but I am wondering if I will be just trading side effects. My PMR came within a few months after COVID vax. So it's a crap shoot as to how your story will go.

@tedmbrady
I have been suffering with with PMR since 01-07-23. My fingers are the biggest pain problem I have. My doctor says I have osteoarthritis in my hands and the PMR causes flares in my hand and he indicated I will always have hand pain. Time will tell. Best of luck And blessings.

Thanks soo much for the nice comments and reassurances (where there can be).

I may try the 2/3 and 1/3 split for an experiment of sorts, especially on non-golf days 🙂 I don't have trouble sleeping (yet) and only have the shoulder pain in bed for like the last hour or so (5:30-6:30am-ish). But then it persists until at least 90 min-2 hr after eating and 20mg (4 x 5mg) prednisone. Mid morning golf is in my short term goals, but I'm not rotating the shoulders (at least easier than raising them or deflecting them down) pain free until before noon! Maybe twilight golf is in my, er, twilight years plan.

I'm here to soak up some PMR knowledge, get through this as well as possible, and maybe help with other brand new sufferers...assuming I learn anything from my journey. 🙂 Thanks

I don't know how avid of a golfer you are but you might want to cut back on it a bit. Perhaps you shouldn't be quite as active as you were. Doing so with PMR will likely result in more pain.

Prednisone can make you feel like you can do superhuman things but try not to overdo things. When you take 20 mg of prednisone it replaces the hormone cortisol that your adrenal glands produce.

'The natural hormone cortisol has many functions. The body regulates the amount of cortisol produced and releases it at appropriate times. Too much and not enough cortisol has harmful effects so that is why the body has a mechanism to regulate the amount of cortisol in the bloodstream. The following link explains what cortisol does and how the body regulates it.
https://www.yourhormones.info/hormones/cortisol/
Prednisone replaces the cortisol that your body produces and disrupts many bodily functions. Your body isn't functioning normally when you take prednisone. Your body isn't functioning normally when you have PMR either. Two reasons to take life easier.

We take prednisone for PMR but you will never be able to regulate your prednisone dose in the same way that your body regulates cortisol.

Pain has a "protective function" so we don't harm ourselves. Our bodies weren't designed to be "pain free". When you take prednisone in higher doses it can make you feel better than you are supposed to feel. That doesn't mean people should have to endure PMR pain or any excessive amounts of pain.

Prednisone isn't a good substitute for cortisol. You will learn more about this when you try to taper off prednisone.

My PMR started in March '23 and I was diagnosed and started on 15mg prednisolone in April. Like you, I expected to be pain free once medicated and to resume normal activities. I achieved fairly good pain control taking 12.5mg in the morning and 2.5mg in the evening.

It turns out that 90% pain relief in the morning was only possible above 10mg, for me. Lots of rheumatologists say 70% pain relief is a "good" result, so many of us have to modify activities, especially in the morning. More than gentle activity = more pain the following morning.

The side effects of prednisolone may soon be more evident to you. After only a few months on prednisilone, the skin on my hands has become shiny and thin, and light gardening leaves my hands bleeding from skin tears. There's a big incentive to find the lowest dose and get off this drug before it does too much irreversible harm. I'm currently on 9mg - 7mg in the morning & 2mg in the evening, with annoying but tolerable morning aches.

Can you play golf in the afternoon instead, when PMR pain is low or almost gone? Some modification to activities will likely be necessary especially as you reduce the dose, as you must.

Hi Ted, I’m sorry you are now part of this “special” group. Since being diagnosed over a year ago, unfortunately, I have never obtained pain free mornings. In fact, it is rare that I am ever pain free. I currently am down to 9 mg Prednisone and take 17.5mg of Methotrexate. I, too, was very active before being diagnosed with PMR. I pray it someday goes away!

It sounds to me like your meds are dosed too low.

The only way I've been literally pain free is by splitting my dose. I asked my doctor about it and he said as long as I take the dose daily, I can take it in the morning, midday, evening, or split it. I was mainly in pain in the morning as most of us are. Now on 11.5mg, I take 5mg in the morning, 3am and 6.5mg at 3pm
I have weird hours.

All good information. Would like to hear of those who went on Methotrexate. I am at that point of trying to decide. I am tired of the skin tears and red blotches from bumps. Is it merely a trade from one set of bad side effects to another? Is it worth doing?