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.

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

I’ve had PMR for 10 years, now. Sigh …

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@violaange

I’ve had PMR for 10 years, now. Sigh …

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OMG – I feel for you. Has it stayed the same during the 10 years or has it been up and down? That is some better months than others?

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It has gotten much better the last couple of years, thank you. I’ve been taking 5mg of prednisone for a couple of years now; each time I’ve reduced it, the PMR has flared up. I am, however going to reduce it again to 4 and try again beginning on Monday. My fingers and toes are crossed.

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First bout was about 17 years ago, lasted 2 years, remission for 12 years. 2nd bout was 5 years ago, off prednisone in 10 months, but PMR was back 8 months later, so the fast decrease was a mistake. Current bout has lasted about 2 years, 4 months and am currently on 3 mg prednisone, gradually reducing to 2.

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I've had two bouts of PMR thirteen years apart. Both lasted seven to eight months in the acute stage, with lingering stiffness and soreness continuing over a year.

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Welcome @shannaam, I've had two bouts of PMR. The first one lasted 3-1/2 years, the second one lasted 1-1/2 years. There was a small study done in 1985 and I'm not sure much has changed.

"The duration of therapy and outcome were examined in 76 patients with polymyalgia rheumatica without evidence of temporal arteritis at presentation. Seventy-five patients received corticosteroids, with a mean prednisone dosage of 22.8 mg per day initially. Duration of therapy was assessed using life-table methods. No significant difference could be ascertained between groups segregated on the basis of age, sex, or initial steroid dosage. The median duration of therapy was 37.3 months. It was estimated that 40 percent of patients will require therapy longer than four years. Corticosteroids were permanently discontinued in 31 patients after a mean of 23.7 months of therapy. The data support the concept of two patient populations–one with limited disease and another requiring long-term therapy. Relapses were frequent, occurring in 56 percent of patients. Evolution of arteritis during the course of therapy was infrequent, occurring in only one patient. Steroid-related adverse effects occurred in 22.7 percent of patients and were more common in females. The data suggest that, although corticosteroids may be discontinued in some patients with polymyalgia rheumatica, prolonged therapy is required in a significant number."
— Polymyalgia rheumatica. Duration of therapy and long-term outcome: https://pubmed.ncbi.nlm.nih.gov/4036982/

There is another discussion that might be helpful for those struggling with tapering off of prednisone.
— PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Have you tried making any lifestyle changes to help with your PMR?

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@johnbishop

Welcome @shannaam, I've had two bouts of PMR. The first one lasted 3-1/2 years, the second one lasted 1-1/2 years. There was a small study done in 1985 and I'm not sure much has changed.

"The duration of therapy and outcome were examined in 76 patients with polymyalgia rheumatica without evidence of temporal arteritis at presentation. Seventy-five patients received corticosteroids, with a mean prednisone dosage of 22.8 mg per day initially. Duration of therapy was assessed using life-table methods. No significant difference could be ascertained between groups segregated on the basis of age, sex, or initial steroid dosage. The median duration of therapy was 37.3 months. It was estimated that 40 percent of patients will require therapy longer than four years. Corticosteroids were permanently discontinued in 31 patients after a mean of 23.7 months of therapy. The data support the concept of two patient populations–one with limited disease and another requiring long-term therapy. Relapses were frequent, occurring in 56 percent of patients. Evolution of arteritis during the course of therapy was infrequent, occurring in only one patient. Steroid-related adverse effects occurred in 22.7 percent of patients and were more common in females. The data suggest that, although corticosteroids may be discontinued in some patients with polymyalgia rheumatica, prolonged therapy is required in a significant number."
— Polymyalgia rheumatica. Duration of therapy and long-term outcome: https://pubmed.ncbi.nlm.nih.gov/4036982/

There is another discussion that might be helpful for those struggling with tapering off of prednisone.
— PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Have you tried making any lifestyle changes to help with your PMR?

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Thank you for your response – very much appreciated. I will definitely read your links. I have had a quick look but there are links within the links! What kind of lifestyle changes are you thinking of? I stand at my desk at work instead of sitting which has helped immensely. I'm exercising still – not as much as I used to but I'm hoping I can get back to the same amount. I'm trying to not be tempted with takeaway food now living in a city as I find a good diet helps as well. I have always said one should treat their body like their car – you wouldn't put bad fuel in a car and expect it to run well! I take 1mg of Prednisone twice a week now and putting up with aches as I hate pharmaceuticals. Any suggestions on life changes would be appreciated.

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@shannaam

Thank you for your response – very much appreciated. I will definitely read your links. I have had a quick look but there are links within the links! What kind of lifestyle changes are you thinking of? I stand at my desk at work instead of sitting which has helped immensely. I'm exercising still – not as much as I used to but I'm hoping I can get back to the same amount. I'm trying to not be tempted with takeaway food now living in a city as I find a good diet helps as well. I have always said one should treat their body like their car – you wouldn't put bad fuel in a car and expect it to run well! I take 1mg of Prednisone twice a week now and putting up with aches as I hate pharmaceuticals. Any suggestions on life changes would be appreciated.

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The kind of lifestyle changes I've found helpful were the diet and exercise. By diet, I mean trying to avoid foods that cause inflammation and eat those that help. Lately I've been using intermittent fasting and trying to keep my consumption of carbs on the lower side. I try not to overdue the exercise which may cause problems for me. There's a good discussion on the low carbs health fats topic — Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

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@johnbishop

The kind of lifestyle changes I've found helpful were the diet and exercise. By diet, I mean trying to avoid foods that cause inflammation and eat those that help. Lately I've been using intermittent fasting and trying to keep my consumption of carbs on the lower side. I try not to overdue the exercise which may cause problems for me. There's a good discussion on the low carbs health fats topic — Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

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Thank you John

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I first came down with PMR in March 2020 after my 2nd Shingrix shot. It took me 20 months of a slow taper up and down to get off prednisone. That was in January 2022. So far I have been doing quite well but still with morning stiffness and now pain in my wrists. Hoping and praying this remission will last. As a hospital pharmacist, I tried every possible way to get off prednisone sooner but it seems you just have to listen to your body and be patient with PMR

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