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

I have had PMR off and on for 30+ years. I have tapered off of prednisone (P) down to zero maybe 20 times. the last 10 years I have been on P constantly. First 2mg for about 8 years then 5 mg for 2 years and not 4 mg along with hydrochloroquine 200 mg.

Is the low dose prednisone you are taking now for adrenal insufficiency caused by long term prednisone use, or do you still have active PMR?

I take prednisone for PMR pain

I too came down with PMR about 10 days after my second Shingrix vaccination- I have to wonder if this should be a warning to those wishing to take the vaccination? I had been on prednisone since November 1 2023, I started at 50mg and am currently down to 10mg - I have some manageable morning aches/stiffness particularly in my hands - but was almost paralyzed in pain before taking prednisone. I have read that PMR can burn itself out in 5 to 6 years but my doctor tells me it’s incurable and that I will likely be on prednisone for life. But reading here - it sounds like some people can be in remission for years - I am 68 and I follow a healthy diet and keep my weight within my BMI limit - I walk everyday - so although I am healthy I am hoping to get off prednisone sometime in the nearer future. It seems everyone has their own experience with PMR - I wish there was more research into this disease and more answers.

Have suffered any side effects from taking prednisone?

The medical literature says PMR lasts 1-2 years for most people. This means approximately 50% or more people newly diagnosed with PMR take prednisone for 1-2 years. There is also a sizable number of people taking prednisone for longer than 2 years.

There are people who have a relapse of PMR after being off prednisone for a while. I don't know the percentage of people who relapse except that relapses occur.

There are also people who take prednisone for a "long time." I was treated with prednisone for PMR for 12 years before getting off prednisone. I probably would have been on prednisone for the rest of my life had it not been for a biologic medication called Actemra (tocilizumab) which helped me get off prednisone.

My rheumatologist said taking prednisone for the rest of my life wasn't good although 3 mg or less for the rest of my life might be okay. The 10 mg dose or more of prednisone I needed for the rest of my life wasn't good.

If you have been on prednisone since November 1, 2023 it is too early to predict how long you will need prednisone.

The conclusion in the following UK study says it well.

"Although accurate prediction is not yet possible, clinicians should monitor people with PMR carefully to manage symptoms and reduce the cumulative glucocorticoid dose."

Having personally taken prednisone for 12 years for PMR ... I wouldn't encourage anyone to take prednisone for that long. People should be encouraged to taper off as soon as possible. In my opinion, being off prednisone in 1-2 years is a reasonable goal.

The link above also addresses the risks of side effects from long term prednisone use.

"There are concerns from professionals and patients regarding the potential side-effects of such long-term glucocorticoid treatment [1, 5–7], and evidence is emerging that people with PMR experience a high burden of incident glucocorticoid-related morbidities, including vascular (23% increased risk), respiratory (25% increased risk), endocrine (41% increased risk) and gastroenterological (21% increased risk) morbidities. Glucocorticoid treatment can also affect the eyes (37% increased risk), in addition to bone health (111% increased fragility fracture risk), and can cause or exacerbate mood problems (29% increased risk)."

It hit me a year ago July. (2022) 10 mg Prednisone was like magic! But as I tried to taper, once all the way down to 2.5, I would sometimes get flares due to physical or emotional stress and have to go back up. I was at 10 again this past October when GCA hit! 😭 So then had to go up to 60; now on 40. When tapering, you need to slow down the rate at which you taper when you get to about seven or 8 mg. And then once you go down to five and under, you need to do a “dead slow taper” for the best chance of not causing a flare. (Also to let your adrenals wake up.)

Thank-you for reminding people about the need for the adrenals to get up to speed. Adrenal function and PMR flares likely go hand in hand. At least this doctor from the UK thinks so.

People tend to forget that the adrenals are the reason why a slow taper off prednisone is needed. How slow of a taper depends on how quickly the adrenals recover ...and if the adrenals recover. If the adrenals don't recover, some people need to take prednisone for the rest of their life.

Yes, that’s true from my research, too. Thanks for posting this article; I hadn’t come across it yet.

Thank you for responding. I only found out the relationship with Shingrix vaccine and PMR by reading the fine print in the package insert. It is a rare side effect. It has made me more cautious about taking other vaccines such as the RSV and additional Covid vaccines. It took me 22 months to completely get off prednisone. Whenever I tried to rush the taper, my pain would increase. My rheumatologist would say PMR is a marathon, not a sprint. But thankfully, and I hope for you, too, I have been off prednisone for more than a year and have no symptoms. Good job staying active and eating well. I think that makes a big difference. Wishing you the very best of health Brian.