1. < Polymyalgia Rheumatica (PMR)

PMR relapse- anyone mild and quick recovery?

Posted by briand3960 @briand3960, 4 days ago

I originally came down with PMR in March 2020 after the Shingrix vaccine and needed a very slow prednisone taper from 15 mg down to 1 mg over around 20 months. I have been in remission for about three years. Symptoms then started up just last month with bilateral shoulder, hip neck pain but not as severe as the original PMR. My inflammatory markers were not that elevated. I was started on prednisone 10 mg and immediately relieved the pain. A month later I’m now on 7.5 mg and still thankfully without pain. I’m wondering if I can go down faster and if this might just need a short prednisone course. Has anyone had a similar recurrence experience?

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tuckerp | @tuckerp | 4 days ago

I had that same thing happen. I had some left over prednisone. I treated just as you would a flare of asthma. They usually give the prednisone in a 5 or 7 day pack. I went 20mg the first two days, then 10mg for 2 days then 5mg and then 2mg. Then stopped. Pain was gone and did not return. Everything I have read your body stops producing cortisol at about 2 weeks. Inside that period of time you can make changes to your dosage. I had made a Dr. appointment but it was long gone by time I saw the Dr. I have had two of those episodes an treated both the same way. I had PMR 4 years ago and both these episodes were in the first year of being off.

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1 reply
briand3960 | @briand3960 | 3 days ago
In reply to @tuckerp "I had that same thing happen. I had some left over prednisone. I treated just as..." + (show)
@tuckerp

I had that same thing happen. I had some left over prednisone. I treated just as you would a flare of asthma. They usually give the prednisone in a 5 or 7 day pack. I went 20mg the first two days, then 10mg for 2 days then 5mg and then 2mg. Then stopped. Pain was gone and did not return. Everything I have read your body stops producing cortisol at about 2 weeks. Inside that period of time you can make changes to your dosage. I had made a Dr. appointment but it was long gone by time I saw the Dr. I have had two of those episodes an treated both the same way. I had PMR 4 years ago and both these episodes were in the first year of being off.

Jump to this post

Thank you very much for sharing your experience. My first thought when I felt this coming on again is it was gonna be another long course and slow prednisone taper. This encourages me that I may be able to resolve this PMR flare very quickly. All the best of health to you!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | 3 days ago

@briand3960 - My first round with PMR took me 3-1/2 years to taper off. It stayed in remission for six years and then it came back and I started on the same 20 mg prednisone. I was able to taper off in 1-1/2 years the second time. I kept a daily pain log and only tapered when my pain level when I got up in the morning was 2 or less and it was time to do my next taper down.

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tuckerp | @tuckerp | 3 days ago
In reply to @briand3960 "Thank you very much for sharing your experience. My first thought when I felt this coming..." + (show)
@briand3960

Thank you very much for sharing your experience. My first thought when I felt this coming on again is it was gonna be another long course and slow prednisone taper. This encourages me that I may be able to resolve this PMR flare very quickly. All the best of health to you!

Jump to this post

Your welcome but its just my experience. We are all so different with so many other things going on that my one experience may be useless. I am a skeptic of the medical field. we look for treatment not cures. They are also faced with lots of patients and a one size doesnt fit all. Most of us spent quite a few months trying to get a diagnosis of PMR. I saw a GP, two orthopedic Dr, and went to emergency before my Rheumatologist diagnosed me. By then I had already diagnosed myself. When I saw him after taking the prednisone pack, he was less than impressed about my treatment plan. Yours may not be PMR. Many have found the PMR awakens other auto immunes. Always best to get checked out. Get well soon.

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DadCue | @dadcue | 3 days ago

You have asked an interesting question. Nobody really knows how long PMR lasts except that prolonged treatment with Prednisone is usually needed. Some people say that for PMR the "average duration of treatment with prednisone" is 5.9 years. Saying the treatment lasts that long doesn't mean PMR lasts that long. The unfortunate side effect of Prednisone is adrenal suppression which occurs within 2-4 weeks.

I had another autoimmune disorder called reactive arthritis. I managed those flares with a high dose of prednisone followed by a fast taper. It was not uncommon for me to take 60 mg of prednisone and taper off within 4 weeks. I was treated by an ophthalmologist who prescribed the prednisone to treat the flare of uveitis that accompanied my reactive arthritis flares. I could achieve remission within a week or two and I was off prednisone again within 4 weeks. Another flare would usually recur within a year but I would be off Prednisone for 9 months and sometimes longer. The flares of reactive arthritis were very painful but the treatment with prednisone wasn't very long like it is for PMR.

When PMR was diagnosed, I initially tried to taper off prednisone in 4 weeks. A fast taper didn't work and that was when my rheumatologist said I would need prednisone for an "extended period of time" which turned out to be 12+ years.

I found the following on the internet:

"In essence, the development of adrenal insufficiency due to glucocorticoid therapy for PMR can create a cycle where the need for treatment is extended because the adrenal insufficiency symptoms mimic the PMR condition, making it challenging to safely reduce or discontinue the steroid medication."

-------------------------
When my chronic PMR was treated with Actemra, remission was achieved in a couple of months. However, I needed to stay on low dose prednisone for 6+ months to let my cortisol level improve.

REPLY
1 reply
briand3960 | @briand3960 | 2 days ago
In reply to @dadcue "You have asked an interesting question. Nobody really knows how long PMR lasts except that prolonged..." + (show)
@dadcue

You have asked an interesting question. Nobody really knows how long PMR lasts except that prolonged treatment with Prednisone is usually needed. Some people say that for PMR the "average duration of treatment with prednisone" is 5.9 years. Saying the treatment lasts that long doesn't mean PMR lasts that long. The unfortunate side effect of Prednisone is adrenal suppression which occurs within 2-4 weeks.

I had another autoimmune disorder called reactive arthritis. I managed those flares with a high dose of prednisone followed by a fast taper. It was not uncommon for me to take 60 mg of prednisone and taper off within 4 weeks. I was treated by an ophthalmologist who prescribed the prednisone to treat the flare of uveitis that accompanied my reactive arthritis flares. I could achieve remission within a week or two and I was off prednisone again within 4 weeks. Another flare would usually recur within a year but I would be off Prednisone for 9 months and sometimes longer. The flares of reactive arthritis were very painful but the treatment with prednisone wasn't very long like it is for PMR.

When PMR was diagnosed, I initially tried to taper off prednisone in 4 weeks. A fast taper didn't work and that was when my rheumatologist said I would need prednisone for an "extended period of time" which turned out to be 12+ years.

I found the following on the internet:

"In essence, the development of adrenal insufficiency due to glucocorticoid therapy for PMR can create a cycle where the need for treatment is extended because the adrenal insufficiency symptoms mimic the PMR condition, making it challenging to safely reduce or discontinue the steroid medication."

-------------------------
When my chronic PMR was treated with Actemra, remission was achieved in a couple of months. However, I needed to stay on low dose prednisone for 6+ months to let my cortisol level improve.

Jump to this post

Thank you very much for sharing your experience and insights. It seems that symptoms and duration of PMR can vary substantially between people. I will certainly be cautious tapering the prednisone too quickly. I am a retired pharmacist and are very familiar with all the potential side effects of prednisone but it gave me my life back after the initial PMR episode. I’m thankful for some new effective therapies like Actemra with potentially fewer side effects. Thanks once again!

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