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Diagnosed with PMR 16 days ago.
After weeks of struggle, I was diagnosed with PMR on 17 June 2025, 16 days ago. The emergency doctor prescribed 20 mg of prednisone and he gave me two weeks worth. The first week it seemed to work well I started the day in a little bit of pain, but by mid morning 10-11 AM, I started to feel good After the first week however, it took longer and longer into the day before I would get any relief sometimes 3 to 4 in the afternoon. I had to call my primary care physician as a result, and after some discussion and hesitancy on his part, we upped the dose to 30 mg as of this past Saturday The first two days I felt like given that the dose had been raised, I was surprised to not get as much relief as I was expecting. But starting late Monday and then come Tuesday and Wednesday I was actually doing quite well. I would wake up a little sore and there was no decline from the time I took the medication to the point where it would then kick in so I was feeling rather optimistic. That was until last evening, 2 July, and into today. I started feeling much stiffer than I would’ve expected for the time of day and by the time I had gotten up in the morning, I was so stiff that I was back to a debilitated state. Not sure what to make of this. I would’ve thought that the 30 mg would’ve would’ve continued working like they had the two previous days but for some reason, I’ve just had a big setback. I do have a doctors appointment today but I do not know what’s gonna come of that appointment cause my doctor is very hesitant to play around with prednisone. Any suggestions would be helpful thank you.
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I don’t understand why a person who has PMR would need to see a rheumatologist
I am on my 3rd time with PMR in 12 years and my PCP advised my care . Took 9 months each time to wean off the predisone
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1 ReactionA PCP decides to refer patients to a rheumatologist when PMR gets complicated. Some people do self referrals to a rheumatologist that is a personal choice.
Tell us more about 9 months of PMR and being able to wean off Prednisone. Three relapses in 12 years isn't bad. Nine months of Prednisone each time isn't that bad either.
Unfortunately we aren't all blessed in the same way. Relapsing PMR often happens before we taper off Prednisone. Then it relapses again and again and before long we have been on Prednisone for years and years. Typically a rheumatologist steps in to see what else can be done for PMR. The PCP gets stuck with treating the Prednisone side effects.
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3 ReactionsThank you for your reply .
I dont have a definite answer as to how to rid the body of PMR or better yet “ why did I ever get PMR ??
Along with monthly blood work to measure inflammation ( Sed rate and CPR ) I definitely exercise in a moderate sense and generally follow a Mediterranean diet .
No one I know is familiar with PMR and so I have traveled this path of PMR with just my PCP .
One detail that I am 99% certain of is the 1st time I got PMR ( approximately 12 years ago ) was after my PCP gave me an extra large dosage of a flu shot .
I woke up 4 days later with much pain in my body and barely able to lift the blankets from my body .
Since I had never really had the flu , my PCP should have asked me if I wanted the shot . Since then ( 13 years ago ) I have never had another flu shot or any covid shots .
Generally speaking , I don’t believe that 1 size dosage of a shot fits all !! I am now 78 .
Another complication of this current PMR is that suddenly my body ( mostly hands ),has attached on body . . Very painful and was on 600mgs od ibuprofen every 8 hours for 2 weeks . The ibuprofen helped with the pain but once I started taking prednisone my PCP did not want me to continue with the ibuprofen. I have weaned off the ibuprofen and have had scans of my hands confirming mild arthritis. I certainly am curious if the painful hands is related to the PMR .
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1 ReactionI agree with the other comments and you need to demand that your primary care physician refer you to a rheumatologist.
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1 ReactionI have been dealing with PMR for about 5 mos. It does not just go away. I have been taking methylprednisolone(steroid). I took 8mg a day for 2 months ,now I am being slowly weaned off of it and my inflamation is gone. You can't just stop taking this medication and you can't take large doses ,it takes time and patience. My primary doc sent me to a rheumatologist, this is his specialty, sometime PCP doc is not the right doc for certain things like PMR. I wish you well.
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1 ReactionReferral was done up today. Thanks
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2 ReactionsStarted split dosing this past Saturday ( without dr approval) was in pain most of the morning and shoulder mobility was nonexistent. Changed to 20mg at 7am, then 10mg at 12:30pm. Taking that 10 later has been keeping me in the therapeutic zone from 4am to the next morning dose and has been working well. After discussion with my pcp Today. We agreed to take the second dose between 2-3 pm. So we’ll see how that goes.
He also did a referral to the rheumatologist.
Wonderful!!
Taking Prednisone is more like art than science. What art I like might not be something you would like and vice versa. Tweak the art a bit and you might start to like it ... so long as your doctor likes it too.
I actually needed less Prednisone when I split my dose compared with when I took one big dose in the morning. I could taper to a lower dose faster too.
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2 ReactionsI am on Methotrexate..Prednisone made me gain weight and made my face round..lol..Methotrexate works Great!!
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2 ReactionsA similar thing happened to me.
Was initially on 20 mg/day of prednisone due to PMR/GCA. This was good at first, but then the pain started creeping back over a few weeks. What happens is that your body senses the prednisone, which acts as synthetic cortisol, and so slowly stops making its own cortisol. This takes a few weeks, during which your pain will increase. In my case, after about a month, the inflammation was so severe that ER doctors then put me on 60 mg/day of prednisone due to an episode of double vision.
I recommend getting CRP and SED inflammation scores. If they are still high, increase the prednisone incrementally until the CRP and SED scores come down to near normal. Then you've found the level of prednisone you need. For me 60 mg/day was more than enough; I actually think 40 mg/day probably would have been enough.
In my case, I also started on weekly injections Actemra after about 5 weeks of 60 mg/day of prednisone. I then tapered off the prednisone over a period of 6 months while continuing the Actemra. I ended up staying on Actemra for 2 years. It was very effective for me and I suffered virtually no side effects.
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