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

I was diagnosed in November 2022. My “flares” start, and are worse in my hands. I can tell when starting as my fingers swell. Do you have swelling of your hands?

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 was diagnosed in June on this year. I am also very active working out every day. I was either lifting weights, walking 6 miles, swimming, working in the yard, etc. I started on 20 mg of prednisone for the first 2 months. My rheumatologist then reduced it to 15, which caused the pain to intensify so she bumped me up to 17.5. That seemed to be ok but the mornings are tough. There are some mornings I actually need a walker to get to the bathroom. Gentle stretches and walking seem to help the most. After 2 weeks of the 17.5 (now on 3 months of taking prednisone), I am back down to 15 but split the dose by taking 10 in the morning and 5 in the afternoon. I will see how that does. I agree, doing anything strenuous in the morning is not a good thing. My Rheum and my PT keep saying less is more with this condition, and that is a very difficult thing to accept and adhere to for some of us. As difficult as it is, I am learning to cut back. Afternoons are definitely more conducive to more strenuous activities (the "new" strenuous for us:-)). The difficulty I am having is I am dealing with RA, osteoarthirtis, bulging and compressed discs so it is trying to figure out what I can do without setting off a reaction to one of the other things.

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!

Calcium supplements can be problematic for some people, potentially causing kidney problems and artery calcification. Best to increase dietary calcium intake instead and take vitamin D3. I also take vitamin K2 which directs calcium to bones and directs calcium out of arteries. Vitamin D is best split into two doses a day to aid absorption, and taken with a meal that includes oil or fat as it is fat soluble. I take two 1000 IU vitamin D3 every day and a K2 (180mg) every second day.

I take my prednisone at 2:00/2:30 with a piece of cheese; when I wake up at 7:00, there’s no pain - just some stiffness.

Hi, Just to add to the confusion. When I was diagnosed in May 2023 I started with 20mg of prednisone. After a few days I reported to my rheumatologist that I wasn’t experiencing the “miracle pain relief” that she had said would happen. She then upped my prednisone to 30mg and BINGO I was pain free. I have continued to be without pain during several months of tapering. Am now down to 8mg. No side effects so far from prednisone (that I can observe). Also taking calcium, vit D, vit K, Pepcid, and fozamax, plustrying to keep to an anti inflammatory diet. My goal is to get off the prednisone without any flares. Right now I am tapering 1mg per month so it will be some time in 2024 that I will reach this goal. You mentioned that you will be seeing a rheumatologist soon. Hopefully you can get answers to all your concerns. Good Luck, be patient. Liz Ward

Is that AM or PM?

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

So I have been splitting my 20mg prednisone to 15 at breakfast and 5 at dinner. The good news:
* daytime pain level is 0-1 still (mornings can be a 5), i.e unaffected
* I seem to be less jittery during the day
* I sleep ok (see below) and have a little less pain upon waking (3 is the average)

The bad news:
* I've been waking up at 5am and having a little problem falling back to sleep for my typical 6:30 awakening. Wondering if taking pill no. 4 earlier or later than dinner would affect this.

So, net/net is that I am quite a lot of the time pain-free, and will keep on the 3/1 split until I see the refered rheumatologist next Tuesday (first visit with him).