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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I’m at 15 months and down to 4 mg prednisone. I can finally say that I’m feeling normal again. I still have shoulder stiffness in the morning and late evening and also the fatigue. My rheumatologist said it lasts, on average, 1-1/2 to 2 years. That being said, it affects every person differently.

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@jillrentas

I’m at 15 months and down to 4 mg prednisone. I can finally say that I’m feeling normal again. I still have shoulder stiffness in the morning and late evening and also the fatigue. My rheumatologist said it lasts, on average, 1-1/2 to 2 years. That being said, it affects every person differently.

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Hi @jillrentas, Welcome to Connect. You have made great progress tapering. My first time around it took 3 and half years to taper off. Have you made any lifestyle changes in diet or exercise to help with the PMR?

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i believe there is a British study that says the median length is 7 years..i am approaching my second year and down to 7mg of prednisone after about 3 relapses..try to keep the faith as it may make you miserable but the disease is not fatal

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@johnbishop

Hi @jillrentas, Welcome to Connect. You have made great progress tapering. My first time around it took 3 and half years to taper off. Have you made any lifestyle changes in diet or exercise to help with the PMR?

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Hi John - I was unable to exercise much prior to PMR and could only walk on flat ground. However, I was so miserable with PMR, I didn’t exercise. Diet has been the same with no changes. I gained 15 lbs but since I hit 5 mg., I’m losing weight. I eat well and limit sweets and watch my carb intake.

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I've had PMR for 2-1/2 years now, and apart from a flew blips back and forth am now down to 3 mgs Prednisone together with 200 mgs of hydroxychloroquine (Plaquenil) . When I asked my rheumatologist if I should go down to 2 mgs. she said: "Why change a sure thing".

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I wish I'd had the Prednisone 5 months earlier. Went undiagnosed for that long or longer. I would much rather be on a lower dose and weaning at this time (which is a slow process). It's tricky because Prednisone can make you feel a lot better than you actually are. Much rather be on it, than suffer the dibilitating pain without it. Actually believe PMR began in May 2021 after my first vax and then escalated after my second vax in August 2021. Family doc said the pain was due to "old age" so went undiagnosed until Jan. 2022 when he finally referred me to a Neurologist. See if you can get referred to a Rheumatologist. Good luck with your journey. Let your body do the talking. ~ Deb

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@ncgal

I've had PMR for 2-1/2 years now, and apart from a flew blips back and forth am now down to 3 mgs Prednisone together with 200 mgs of hydroxychloroquine (Plaquenil) . When I asked my rheumatologist if I should go down to 2 mgs. she said: "Why change a sure thing".

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Good thinking. Dr. Gustupa (a PMR expert from the UK) regularly keeps his patients on 2 mgs. to prevent recurrence.

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How long does this last? I’m 61. I started having issues with pain in May of 2021 after Covid vaccines. I could hardly walk 1/2022. I can’t take Prednisone due to severe depression with it. I am Soooo over this!!!!!

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@kimmur

How long does this last? I’m 61. I started having issues with pain in May of 2021 after Covid vaccines. I could hardly walk 1/2022. I can’t take Prednisone due to severe depression with it. I am Soooo over this!!!!!

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Hi @kimmur, Welcome to Connect. I think you feel the same way about PMR as most of us, we are all ready to be over it as soon as it starts...it's the pits. You will notice that we have moved your post to an existing discussion on the same topic where you can meet other members who have shared their experience with PMR.

I've had 2 occurrences of PMR. The first one lasted 3 and half years before I was able to taper off of prednisone and the second one lasted about a year and half which kind of falls in line with what I've read.

"PMR may last from one to five years; however, it varies from person to person. Approximately 15 percent of people with PMR develop a potentially dangerous condition called giant cell arteritis." --- Polymyalgia Rheumatica - Arthritis Foundation: https://www.arthritis.org/diseases/polymyalgia-rheumatica

Have you discussed any possible alternatives for prednisone with your rheumatologist or doctor?

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@ncgal

I've had PMR for 2-1/2 years now, and apart from a flew blips back and forth am now down to 3 mgs Prednisone together with 200 mgs of hydroxychloroquine (Plaquenil) . When I asked my rheumatologist if I should go down to 2 mgs. she said: "Why change a sure thing".

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There are doctors who keep their PMR patients on a low dose of prednisone with good results.

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