1. < Polymyalgia Rheumatica (PMR)

How long has PMR lasted - I'm trying to find the average

Posted by shannaam @shannaam, Apr 16, 2022

I've had PMR for just over a year now and I'm trying to reduce the Prednisone as I hate taking pharmaceuticals. Just wondering how long I'm going to have to put up with it! My doctor has said very little as they don't seem to know why people get only to take Prednisone to ease the pain. Also that it can last between 1 & 5 years! Just trying to find out from people who have it or had it - to get an average.

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harelover | @harelover | Dec 14, 2023

Thank you for the detailed explanation. I'll talk to my rheumatologist next week and hopefully we can come up with a plan.

REPLY
lowell77 | @lowell77 | Dec 14, 2023
In reply to @harelover "I have been tapering from 20mg since my initial diagnosis in July. I have just dropped..." + (show)
@harelover

I have been tapering from 20mg since my initial diagnosis in July. I have just dropped to 5mg but unfortunately my symptoms are returning. I have been splitting my dose 1/2 mid day and 1/2 night. I was getting no relief when I took it in the morning and only saw positive results when I switched to taking it at night. I had no trouble sleeping. Now I'm wondering if I should try switching the time again since I read on this forum that morning is the best time as it mimics the body's natural cortisol rhythms. I'm also wondering if Kevzara might be in my future. Am I correct that you still take predisone while on Kezvara but can taper more quickly. What is the typical dosage of predisone when first starting Kezvara?

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Sorry, no experience with Kezvara. My story in brief: Diagnosed with PMR in August. Started pred at 25 mgs. in the morning. No help. Bumped to 25. No help. BUT, then I learned that people were splitting doses, which my docs sort of reluctantly approved. Half in morning and half at night gave me huge relief right away the next day. Been tapering by 2 mgs every two weeks since then. Now down to 12 per day and will slow down further by tapering by one meg per month soon. So far so good. Following this helpful thread, everybody seems to agree a very, very slow taper is best. Good luck!

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1 reply
DadCue | @dadcue | Dec 14, 2023
In reply to @lowell77 "Sorry, no experience with Kezvara. My story in brief: Diagnosed with PMR in August. Started pred..." + (show)
@lowell77

Sorry, no experience with Kezvara. My story in brief: Diagnosed with PMR in August. Started pred at 25 mgs. in the morning. No help. Bumped to 25. No help. BUT, then I learned that people were splitting doses, which my docs sort of reluctantly approved. Half in morning and half at night gave me huge relief right away the next day. Been tapering by 2 mgs every two weeks since then. Now down to 12 per day and will slow down further by tapering by one meg per month soon. So far so good. Following this helpful thread, everybody seems to agree a very, very slow taper is best. Good luck!

Jump to this post

A 1 mg per month taper after getting down to 10 mg is a standard tapering plan.

In theory, a person might be able to taper more quickly when on a biologic medication. This assumes the biologic works. Actemra worked for me for PMR and allowed me to taper faster. I just needed some extra time for my adrenals to recover.

After I got off prednisone, I learned about some conditions that prednisone was "masking." There were several "surprises" after I got off prednisone when the mask was removed.

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2 replies
Linda Moross | @lmoross | Dec 15, 2023

Mine lasted five years.

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alissahe | @alissahe | Dec 17, 2023

13 months and counting

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DadCue | @dadcue | Dec 17, 2023
In reply to @hunib33 "@dadcue 9 months" + (show)
@hunib33

@dadcue 9 months

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I applaud you for getting off prednisone so quickly. You did much better than me.

It took me 13 years to get off prednisone after PMR was diagnosed. I am still being treated for PMR though. It is a misconception that PMR lasts until you are able to get off prednisone.

Even when people get off prednisone --- I wonder if PMR is finished --- as in over and done with? People often relapse so the best one can say is PMR was in remission for a while. Heck, people relapse while they take prednisone. I certainly had flares on moderately high doses of prednisone. I don't think it had anything to do with tapering too quickly given I took prednisone for 13 years. It was driving me crazy trying to decide how much prednisone I should take every day!

I have another autoimmune condition. Remission is the first step for that condition. The treatment goal is to prevent it from recurring.

I think prevention should be the goal for PMR too. As it stands ... the treatment for PMR is to "manage symptoms with prednisone and wait" until PMR decides to burn itself out.

I tried not to complain about anything. Maybe I should have complained more about how long I had to wait. I would have been fine taking prednisone for 1 to 2 maybe 3 years. That was the original plan anyway.

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1 reply
hunib33 | @hunib33 | Dec 17, 2023
In reply to @dadcue "I applaud you for getting off prednisone so quickly. You did much better than me. It..." + (show)
@dadcue

I applaud you for getting off prednisone so quickly. You did much better than me.

It took me 13 years to get off prednisone after PMR was diagnosed. I am still being treated for PMR though. It is a misconception that PMR lasts until you are able to get off prednisone.

Even when people get off prednisone --- I wonder if PMR is finished --- as in over and done with? People often relapse so the best one can say is PMR was in remission for a while. Heck, people relapse while they take prednisone. I certainly had flares on moderately high doses of prednisone. I don't think it had anything to do with tapering too quickly given I took prednisone for 13 years. It was driving me crazy trying to decide how much prednisone I should take every day!

I have another autoimmune condition. Remission is the first step for that condition. The treatment goal is to prevent it from recurring.

I think prevention should be the goal for PMR too. As it stands ... the treatment for PMR is to "manage symptoms with prednisone and wait" until PMR decides to burn itself out.

I tried not to complain about anything. Maybe I should have complained more about how long I had to wait. I would have been fine taking prednisone for 1 to 2 maybe 3 years. That was the original plan anyway.

Jump to this post

@dadcue. Yes PMR does need to burn itself out. I read a post on this site; a patient thought they had a PMR flare and they were waiting for a appt with their physician. It took 6 weeks for them to get in to see him and when they did, lab results determined they didn’t have PMR anymore, but the symptoms linger sometimes for a few months and then it may take several more weeks to feel like yourself, according to their doctor. According to your post, you have some other things going on. It’s always something 😆

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