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.

@ldingwall88

So I'm reading all these posts with some trepidation, because I've been put on 40mg prednisone for 4 weeks, to begin tapering after that. This was due to my initial flare only being alleviated by a quick but strong course of prednisone (60mg down), but when I got below 20mg, the PMR came roaring back. So we tried 25mg, then 30mg, with no relief. It only helped when I went back up to 40mg. My dr said that it's essential to stop the flare due to the possibility of developing GCA, and frankly I'd take 1000mg of the stuff if it stopped the pain. In 2 weeks I'll begin to taper to 30mg for a month, then down again, but I'm nervous about being on so much prednisone for so long. Right now I'm seeing my neurologist--who treats PMR in some patients as it's associated with GCA and vasculitis--and am waiting for my rheumatologist appointment at the end of October. (But I trust my neurologist.) Has anyone else had to start out on such a high dose for this long?

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My PMR pain can be so severe, so debilitating. I feel for you. I wouldn't wish this on anyone. 20mg of Prednisone daily doesn't get it done. My doctor won't increase the dose because of concerns about the potentially risky side effects. I'll take those risks if it'll stop this pain.

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@joeblo746

My PMR pain can be so severe, so debilitating. I feel for you. I wouldn't wish this on anyone. 20mg of Prednisone daily doesn't get it done. My doctor won't increase the dose because of concerns about the potentially risky side effects. I'll take those risks if it'll stop this pain.

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@joeblo746, If the 20 mg doesn't get it done for you it's time to have a serious chat with your doctor and possible seek a second opinion from a rheumatologist. We are all a little different and there are some conditions that mimic PMR symptoms which can be hard to diagnose.

-- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Members that have had Giant Cell Arteritis (GCA) along with their PMR generally have to start treatment at a higher dosage of prednisone than what a lot of primary care doctors consider the standard dose of 15 to 20 mg prednisone.

Can you ask your doctor for a referral to a rheumatologist?

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@johnbishop

@joeblo746, If the 20 mg doesn't get it done for you it's time to have a serious chat with your doctor and possible seek a second opinion from a rheumatologist. We are all a little different and there are some conditions that mimic PMR symptoms which can be hard to diagnose.

-- Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica

Members that have had Giant Cell Arteritis (GCA) along with their PMR generally have to start treatment at a higher dosage of prednisone than what a lot of primary care doctors consider the standard dose of 15 to 20 mg prednisone.

Can you ask your doctor for a referral to a rheumatologist?

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John, I read the articles in the link you posted. Thank you. I'm learning more everyday. Actually this is coming from my... new Rheumatologist. (My apologies, I should have been more specific. I just started seeing him.) He's the one that officially diagnosed PMR, lowered my daily Prednisone dose and put me on what I've come to learn is a tapering dose. 20mg daily this month, 17.5 mg daily next month and 15 mg daily on the third month. I have an appointment before the end of the third month so I guess I'll know more at that time. The pain that had been manageable, is back with a roar. I'm hopeful this will subside with time as it seems to do for many.

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@joeblo746

My PMR pain can be so severe, so debilitating. I feel for you. I wouldn't wish this on anyone. 20mg of Prednisone daily doesn't get it done. My doctor won't increase the dose because of concerns about the potentially risky side effects. I'll take those risks if it'll stop this pain.

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I'm so sorry to hear this and completely sympathize with your situation. 40mg is definitely a higher dose, but it works, and I'm hoping to be able to step down soon. If 20mg isn't working for you, I agree with others that you should definitely try to see a new doctor/rheumatologist. From what I've learned, too many doctors are overly fixated on reducing steroid use at the expense of pain--and pain equals inflammation, so they're not actually treating the PMR if they don't eliminate the inflammation before starting a taper. The side effects are pretty miserable, but frankly I'd take them over the pain any day. Good luck to you and I hope you find relief soon.

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@joeblo746

John, I read the articles in the link you posted. Thank you. I'm learning more everyday. Actually this is coming from my... new Rheumatologist. (My apologies, I should have been more specific. I just started seeing him.) He's the one that officially diagnosed PMR, lowered my daily Prednisone dose and put me on what I've come to learn is a tapering dose. 20mg daily this month, 17.5 mg daily next month and 15 mg daily on the third month. I have an appointment before the end of the third month so I guess I'll know more at that time. The pain that had been manageable, is back with a roar. I'm hopeful this will subside with time as it seems to do for many.

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The one thing I learned from my rheumy was that you have to listen to your body when you start tapering, slow and easy wins the race when tapering. Took me 3 and half years to taper off the first time I had PMR and the last six months was going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking prednisone and my aches in the morning were minimum and got better as I started to move around.

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@ldingwall88

I'm so sorry to hear this and completely sympathize with your situation. 40mg is definitely a higher dose, but it works, and I'm hoping to be able to step down soon. If 20mg isn't working for you, I agree with others that you should definitely try to see a new doctor/rheumatologist. From what I've learned, too many doctors are overly fixated on reducing steroid use at the expense of pain--and pain equals inflammation, so they're not actually treating the PMR if they don't eliminate the inflammation before starting a taper. The side effects are pretty miserable, but frankly I'd take them over the pain any day. Good luck to you and I hope you find relief soon.

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Very sorry to hear that your pain is not resolved. I will echo what others have said, speak with your rheumatologist or seek a new one that will listen. My pain was not resolved with 20 mg so I spoke with my rheumatologist and shared my pain diary with him. He increased my prednisone to 25 mg based on that for 2 weeks and that was all that was needed. I have now been able to begin tapering and am already back down to 20 mg. John (our moderator) does a great job of reminding us of the benefits of keeping a pain journal and I believe that it could be key to helping your rheumatologist understand how you are responding to treatment. Good luck!

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@joeblo746

John, I read the articles in the link you posted. Thank you. I'm learning more everyday. Actually this is coming from my... new Rheumatologist. (My apologies, I should have been more specific. I just started seeing him.) He's the one that officially diagnosed PMR, lowered my daily Prednisone dose and put me on what I've come to learn is a tapering dose. 20mg daily this month, 17.5 mg daily next month and 15 mg daily on the third month. I have an appointment before the end of the third month so I guess I'll know more at that time. The pain that had been manageable, is back with a roar. I'm hopeful this will subside with time as it seems to do for many.

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@joeblo746 If you have PMR and are not getting enough prednisone your pain will not subside. As the inflammation accumulates it will only get worse and you'll have a flare. I'm fortunate to have a Rheumatologist who knows that my body determines tapering, not some schedule. Three years ago I started on 15 mgs. which worked wonders for me. When I dropped to 12.5 (4-6 weeks later) I experienced some pain, but very manageable. That was three years ago. I still try, but struggle to get below 10 mgs. I was at 7.5 briefly, but had a flare and went back up to 12.5. and have been slowly reducing 12, 11, and now 10 again where I'll stay for awhile and make sure I stabilize. We're all different. Some people are in remission and off prednisone in a few years. For others, they're still battling PMR a decade later. According to Mayo, the average is 5.9 years. Unfortunately many doctors don't know this and think most of us should be fine in a few years.

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@johnbishop

The one thing I learned from my rheumy was that you have to listen to your body when you start tapering, slow and easy wins the race when tapering. Took me 3 and half years to taper off the first time I had PMR and the last six months was going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking prednisone and my aches in the morning were minimum and got better as I started to move around.

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Hi …I agree that’s it works better to ramp down slowly. I’ve had PMR since last spring and started on prednisone in Sept. 2021. I’m at 10mg (down from 20 since January) and 99% pain free. At this point it takes me 5 days of going back and forth between the new and old dose to ramp down to the new dose. I’m ramping down 1 mg at a time. When I get to 6mg, I’ll taper 1 month at a time. It’s really hard to be patient on the tapering as I’m having some side effects (gastritis, sugar hovering around 100, bottom reading on blood pressure lower). A couple of times I’ve stayed at a dose for an extra few days to be on the safe side.

BTW…I tried curcumin and acupuncture for three months before going on prednisone. They were not effective.

Hope this info is helpful! I really appreciate the blog!

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@kmeikle1

@joeblo746 If you have PMR and are not getting enough prednisone your pain will not subside. As the inflammation accumulates it will only get worse and you'll have a flare. I'm fortunate to have a Rheumatologist who knows that my body determines tapering, not some schedule. Three years ago I started on 15 mgs. which worked wonders for me. When I dropped to 12.5 (4-6 weeks later) I experienced some pain, but very manageable. That was three years ago. I still try, but struggle to get below 10 mgs. I was at 7.5 briefly, but had a flare and went back up to 12.5. and have been slowly reducing 12, 11, and now 10 again where I'll stay for awhile and make sure I stabilize. We're all different. Some people are in remission and off prednisone in a few years. For others, they're still battling PMR a decade later. According to Mayo, the average is 5.9 years. Unfortunately many doctors don't know this and think most of us should be fine in a few years.

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I am beginning my 1/2 mg the end of this week. I do have shoulder, upper arm pain and my one hand. I take tylenol some nights, and it helps a little. I'm determined, as long as my blood tests stay normal to not go back on this Prednisone. Pain is not great but neither is my bone density and blood sugars on this. I may have no choice at some point but for now, I'm going to stay where I am. Exercise helps, and I'll continue with my walking. I see the Rheumatologist in 3 more weeks so I will see what the blood tests show. I do think it's odd that more people are getting this. My husband sees it in his patients. Strange.

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There are definitely trade-offs in dealing with PMR. If I'm reading you right, you're at .5 mgs. That's a significant accomplishment. Just as a thought, Dr. Desgupta (I think that's it), a UK PMR expert, is keeping some of his patients on 2 mgs. permanently. This dose keeps PMR symptoms at bay and results in few or no side-effects. May be something to think about if you struggle. Best to you.

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