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

Posted by tedmbrady @tedmbrady, Sep 3, 2023

I am 69, fairly active, avid golfer, etc. After dealing with hip, hamstring and especially shoulder pain and extreme soreness I had my CRP measured a little more than a month ago (23.8) and was fairly quickly diagnosed by my GP as having PMR. I started with 15mg prednisone and after a week went to 20mg. This dosage allows me to play golf and be pain free (mostly) by midday. They referred me to a Rheumatologist whom I see on the 19th for the first time. I have a second blood test this Tuesday (5th).

Question: can I anticipate ever being pain free first thing in the morning (only shoulders hurt, but pain is not inconsequential)? Or is this an indication that maybe 20mgs is not yet enough? I realize I'm only 4-6 weeks into this, but other threads suggest the prednisone should be able to wipe this out for now (I realize it is with me forever and might rear its head in months or years, but hoping this first episode finally goes away for awhile).
Thx
Ted

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@tls4

Sugar of any kind is inflammatory, even sugar that occurs naturally in fruit (and wine!) So are carbs, because they turn to sugar to burn as calories. You want to keep your sugar as low as possible, so kicking wine out is worth a try. Opt for berries in your diet as they are low in sugar. And low carbs. High quality proteins, lots of greens and non-starchy vegetables of all kinds, and healthy fats (avocados, olive oil, coconut oil, etc) is what works best for most people. Everyone is different.

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Thanks for the input. So far I have been getting good results from changing the timing of my daily Predisone dosage, thanks to posts from this forum. I still have not had any wine and thankfully I don't consume sugary treats or drinks but I do eat non-berry fruit. Its really hard to figure out which thing has an impact when you try so many new things at once. I'll need to keep better track.

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@harelover

Thanks for the input. So far I have been getting good results from changing the timing of my daily Predisone dosage, thanks to posts from this forum. I still have not had any wine and thankfully I don't consume sugary treats or drinks but I do eat non-berry fruit. Its really hard to figure out which thing has an impact when you try so many new things at once. I'll need to keep better track.

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Yes, we are all doing our best to figure out what works for each of us. Best to you!

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Hello.
Kind of a late response to your post. Still not an expert navigating the site. In my experience with PMR, so far, (10 months) I'm learning how to live with the least amount of pain. And yes, there have been pain free intervals. Before I knew that I had PMR, I was exacerbating my pain on exertion in cold weather. Thought I could do the same level of activity when I started the Prednisone. Had to get to a level of acceptance on the reality of this disease and find a level of moderation. (reluctantly). Some of my woodcraft projects take a lot more time now because the repetitive use of my arms can cause mild to moderate flare ups. They're not real bad. A little scary while I'm waiting to see if I crossed the line into a full blown flare that needs a bolus approach to my prednisone again. Ironically, the real flare up that I've had so far came from a rapid temperature change, not from exertion. As I pay more attention to my body, I'm noticing a "conditioning" of sorts. I don't think I want to be the thermometer anymore. Pushing the limit. Setting the thermostat makes more sense. I don't expect to be perfect at it. Because of this PMR I believe we have to be cautious when operating golf clubs and miter saws. Just like the warnings we get on our prescription bottles. When I'm pain free is when I need to stay vigilant with my situational awareness and not get overconfident. From what I'm learning, many of us have co existing medical problems. Wish you the best. and hope you find the balance to enjoy all that you love to do. Carefully.

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My experience was to be started on 20. The pain continued. After 4 days, my dose was increased to 30. Pain went away after 1 more day. I maintained that dose for two weeks, pain-free, started to taper, and was reduced to 25. After two more weeks, I was reduced to 20. Still pain free, and the plan is to continue to taper every two weeks until reaching 10, when another round of labs and an evaluation will be done. I do not understand that you cannot provoke a dosage increase by the doc. Frequent and timely access to your doc should allow for an assessment about a dosage increase. You should not have to endure the pain you are experiencing, especially as you are not on anything approaching a high dose at present.

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Ted…another point. I was cautioned about overdoing physical activity (maybe your golf ?) as it can prolong the PMR inflammation unnecessarily. I was asked to confine my exercise to walking at least a mile daily for the time being. So far, completely pain-free for 5 weeks and tapering after quickly elevating to the dose (30) that stopped all pain. Good luck.

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@art43

My experience was to be started on 20. The pain continued. After 4 days, my dose was increased to 30. Pain went away after 1 more day. I maintained that dose for two weeks, pain-free, started to taper, and was reduced to 25. After two more weeks, I was reduced to 20. Still pain free, and the plan is to continue to taper every two weeks until reaching 10, when another round of labs and an evaluation will be done. I do not understand that you cannot provoke a dosage increase by the doc. Frequent and timely access to your doc should allow for an assessment about a dosage increase. You should not have to endure the pain you are experiencing, especially as you are not on anything approaching a high dose at present.

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Hi, My situation was very similar to Art’s. When I started at 25 mg of prednisone and pain did not diminish completely. My Rheumatologist upped dosage to 30. Wow, that made all the difference! My taper was similar to Art’s and now I am at 6mg, going very slowly. Of course, goal is to get to 0. I am a bit nervous as I approach 5mg and below. I would ask your rheumatologist if you could try a larger dosage for a short while to see if your pain goes away. Carpe Diem, Liz Ward

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@art43

Ted…another point. I was cautioned about overdoing physical activity (maybe your golf ?) as it can prolong the PMR inflammation unnecessarily. I was asked to confine my exercise to walking at least a mile daily for the time being. So far, completely pain-free for 5 weeks and tapering after quickly elevating to the dose (30) that stopped all pain. Good luck.

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I've gone 2 weeks at 35 mg with no pain, so weened back to 32.5 for the past 13 days (pain free), and now ready to go drop to 30 tmrw. Hoping continued pain-free. I play golf twice a week but lost all touch on and around the greens. Longer than ever, though. 🙂
Ted

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When I’m at the right dose of prednisone I have mild stiffness in the morning that lets up within an hour or so.

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I’ve been off of Prednisone about a year now. As I recall, after going on Prednisone for a couple of weeks, my mornings were pretty pain free. I have been off P for a year now and feel pretty good in the mornings, except for expected 72 year old stiffness. Perhaps your current dosage is not high enough? Best to check with MD.

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My very simplistic answer is that you will be pain free when you're on the right dosage. My body is fine at 15 mg but I get achy when I try to reduce below that, with pain and stiffness increasing with each reduction. Typically one will start with somewhere around 30 mg daily and then try to adjust downwards from that. Good luck.

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