1. < Polymyalgia Rheumatica (PMR)

PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

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

tillysam | @tillysam | Aug 8, 2022
In reply to @tsc "Hi @tillysam, From what I've read, the onset of pain with PMR is worse in the..." + (show)
@tsc

Hi @tillysam, From what I've read, the onset of pain with PMR is worse in the morning and recedes later in the day. My pain was terrible most of the day in all the places you mentioned. It lessened somewhat in the evening. I exercised and stretched as much as I could, but nothing helped much. I also became anorexic and got anemia, both symptoms of PMR and GCA. I had PMR first, then GCA. If, on a higher dosage of prednisone your pain is relieved, that's an indicator of PMR, according to medical text books. I had full blown PMR for about four months with only slightly elevated inflammation markers which caused my Primary Care Doctor to miss it. Your case is unusual because you had GCA first, now, most likely have PMR. Usually, the order is reverse. Good luck, I hope you find some relief fast.

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Thank you for taking the time to answer me.

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tillysam | @tillysam | Aug 8, 2022
In reply to @ldingwall88 "Hi, I'm curious to know if you did a slow taper from 80mg down to 7mg...." + (show)
@ldingwall88

Hi, I'm curious to know if you did a slow taper from 80mg down to 7mg. As I wrote above, I'm on 40mg for PMR because every time I tapered below that I'd get another fully fledged flare. (My symptoms started at the end of May 2022) From what you say, and since you have GCA which is closely related, it sounds to me like you also have PMR. But I'm certainly no expert! If you're having debilitating pain at 7mg, it's worth trying to go up a bit, because you don't want it to turn into a major flare. Good luck, I hope you find relief.

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It has taken me 2 years to get to 7 mg of Prednisone

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tillysam | @tillysam | Aug 8, 2022
In reply to @kmeikle1 "@tillysam I have PMR with normal Sed and CRP. You should not be in awful pain...." + (show)
@kmeikle1

@tillysam I have PMR with normal Sed and CRP. You should not be in awful pain. At what level of prednisone did you last feel good?

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Looking back I think I felt ok at 10 mg and above. Thanks for answering.

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kmeikle1 | @kmeikle1 | Aug 8, 2022

@tillysam Common recommendation is to go back to where you last felt good (say 10 mgs.), stabilize and then begin 1/2 mg. reductions when you're ready. If you have PMR and are in pain, you are not taking enough prednisone. Your inflammation will accumulate and you'll have a flare (if you don't have one already). I do hope your doctor is aware that approximately 20% of us who suffer from PMR have normal blood markers.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 8, 2022
In reply to @elizabethjoan "There is so much in our group about prednisone but I am still confused. I have..." + (show)
@elizabethjoan

There is so much in our group about prednisone but I am still confused. I have been diagnosed for a month. Started on 20mg OD, decrease to 15 mg OD after two weeks and supposed to go to 10mg tomorrow. My clinical picture is ….I take prednisone at 9:30 am. They take effect by 1pm. I am virtually pain free from mid afternoon until 4am. I then wake and the pain increases very rapidly over the next few hours to a level of about 7 or 8. Also the stiffness returns but not too bad. I supplement with Tylenol and/or Advil and that does give me some relief.
Question….should I decrease to 10mg tomorrow as scheduled or should I have less pain before decreasing? What are the thoughts of taking 10mg at 9:30 am and 5 mg, say, 4pm or with supper?
Will be interested in the opinions of others who have dealt with this much longer than I have.

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Welcome @elizabethjoan, It can be confusing trying to treat your PMR symptoms. You will notice that we merged your post into the following existing similar discussion so that you can meet other members and learn what they have shared -- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/ .

If I understand correctly, you were only diagnosed with PMR about 1 month ago and started on 20 mg prednisone and it provides pain relief until early morning. That part sounds fairly normal and similar to what I experienced except I always took my prednisone dose early in the morning with my breakfast or before. Then you mentioned decreasing to 15 mg after 2 weeks. That seems pretty aggressive for tapering. I know we are each different but my rheumatologist had me on a monthly taper but it was flexible depending on the pain I was feeling and I was told not to taper to the next level if the pain was too much. He had me keep a daily pain log along with the dosage of prednisone. If my pain level was 1 or 2, I felt I could taper to the next level. If it was above a 3, then I would increase my dose by half of the previous taper down dosage. If I dropped 5 mg for the last taper, then I would go up by 2.5 mg. He got me scripts for 5, 2.5 and 1 mg tablets so that I could easily adjust the dosage while tapering down.

Other members who have split their prednisone dosage between morning and evening and may have some suggestions for you. Are you able to discuss the tapering schedule and that it may be a little aggressive with your doctor or rheumatologist?

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Teri | @tsc | Aug 8, 2022
In reply to @tillysam "Thank you for taking the time to answer me." + (show)
@tillysam

Thank you for taking the time to answer me.

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Please post a follow up. I hope everything goes okay.

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tillysam | @tillysam | Aug 8, 2022

I think that I am in Prednisone detox. Doing some research I have come to that conclusion because of all my side effects I am experiencing.

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tillysam | @tillysam | Aug 8, 2022
In reply to @kmeikle1 "@tillysam Common recommendation is to go back to where you last felt good (say 10 mgs.),..." + (show)
@kmeikle1

@tillysam Common recommendation is to go back to where you last felt good (say 10 mgs.), stabilize and then begin 1/2 mg. reductions when you're ready. If you have PMR and are in pain, you are not taking enough prednisone. Your inflammation will accumulate and you'll have a flare (if you don't have one already). I do hope your doctor is aware that approximately 20% of us who suffer from PMR have normal blood markers.

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Thank you for taking the time to answer. After much discussion and research, I think that I am detoxing from the Prednisone.

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aspine | @aspine | Aug 11, 2022
In reply to @tillysam "I was diagnosed with GCA in 2020 and put on 80 mg. of Prednisone(so that I..." + (show)
@tillysam

I was diagnosed with GCA in 2020 and put on 80 mg. of Prednisone(so that I did not go blind). I have noticed as I have tapered that I have pain in my arms, shoulders, neck, hips and knees. At that time I asked my doctor if he thought I had PMR and he told me that I did not because my sedimentation and CRP were good. I did some research and found out that you do not have to have an elevated sedimentation and/or CRP to have PMR. Now that I am at 7mg. of Prednisone the pain is awful. I will be speaking to my doctor about upping the Prednisone to see if some of the pain gets alleviated.
Has anyone experienced anything like this? My morning is awful but as the day goes on I feel better. Exercise does help.

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Hi, tillysam, You are correct. Your CRP and ESR don't necessarily have to be elevated for you to have PMR. And if the blood work was done after you were on the prednisone, that's probably why. The prednisone gets rid of the inflammation and lowers your numbers. My numbers have been in the normal range from the first month after I was started on pred., eleven months ago. You don't say how quickly you tapered, from 80 mg., but however you did it, it was a long way to go in less than 2 years, to be at 7mg. now. My guess is you probably tapered a little to much and too fast as you got closer to 7mg. If you have pain, it's usually because you're not taking enough prednisone to get rid of the inflammation at this time. You should probably go back to the last amount you were taking before you started feeling the pain. Stay there for a week or two until you're feeling good again. Then start back down very gradually. Maybe half a mg. at a time, every 3 or 4 weeks. Even that could be too fast. Everyone is different. But don't go down if you're feeling any pain. Stay put until you're feeling good. Then try it. This taperin thing takes patience!! Good luck!

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tillysam | @tillysam | Aug 12, 2022
In reply to @aspine "Hi, tillysam, You are correct. Your CRP and ESR don't necessarily have to be elevated for..." + (show)
@aspine

Hi, tillysam, You are correct. Your CRP and ESR don't necessarily have to be elevated for you to have PMR. And if the blood work was done after you were on the prednisone, that's probably why. The prednisone gets rid of the inflammation and lowers your numbers. My numbers have been in the normal range from the first month after I was started on pred., eleven months ago. You don't say how quickly you tapered, from 80 mg., but however you did it, it was a long way to go in less than 2 years, to be at 7mg. now. My guess is you probably tapered a little to much and too fast as you got closer to 7mg. If you have pain, it's usually because you're not taking enough prednisone to get rid of the inflammation at this time. You should probably go back to the last amount you were taking before you started feeling the pain. Stay there for a week or two until you're feeling good again. Then start back down very gradually. Maybe half a mg. at a time, every 3 or 4 weeks. Even that could be too fast. Everyone is different. But don't go down if you're feeling any pain. Stay put until you're feeling good. Then try it. This taperin thing takes patience!! Good luck!

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Thank you for taking the time to answer.
It took 2 yrs to go from 80 mg to mg.
My doctors now feel I am going through Prednisone detox which is brutal. I taper 1 mg a month.

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