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DiscussionNew PMR patient, wondering if mornings will become pain free someday
Polymyalgia Rheumatica (PMR) | Last Active: Jun 1 11:10am | Replies (120)Comment receiving replies
Replies to "Thanks soo much for the nice comments and reassurances (where there can be). I may try..."
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.
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.
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).
I'm fairly new to this group having been diagnosed July 23. Like most I started on 20 mg Predisone then went to 15 and am now starting 12.5 x three weeks. The big improvement for me came after I started taking my dosage at night instead of the mornings. I am now waking up pretty much pain free. I know the symptoms are still lurking under the surface as certain activities can illicit pain and by 8pm I'm pretty achy. I have added one Tylenol PM and have had no trouble sleeping. I hope that I can continue on this path. If this taper doesn't do the trick then it's on to Kesvera.
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.