1. < Polymyalgia Rheumatica (PMR)

Newly diagnosed and contemplating how long this has been coming on.

Posted by nothatkaren @nothatkaren, 3 days ago

A couple of years ago, I started experiencing unexplained muscle pain in my back muscles on both sides of my spine, from my shoulders down to my hips. It was a different kind of pain than I'd ever had; a deep and burning ache, persistent, always there, but worse at night and in the morning. I blamed it on aging and didn't really pursue it because although I was uncomfortable, I was managing. This summer it got a lot worse to the point that I was pretty much debilitated. The pain was terrible and it spread from my shoulders down my arms, my back, hips, and legs. I couldn't dress myself. I was diagnosed with PMR about a month ago. I'm not all that good with medical jargon, but the inflammation levels in my blood were 55, and normal is below 10. I was put on 65mg Prednisone daily. It was like a miracle. The pain was gone the next day, and I hadn't felt that good in 20 years. The doctor reduced the dosage to 50mg after 10 days, and I have now reduced to 25mg daily. Problem is that the pain is coming back. My question though, is this; Could I have had this for quite some time before being diagnosed, just not as severely as when this major flare up occurred?

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

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

Hello @nothatkaren, Welcome to Connect. Good question and PMR does seem to sneak up on you from nowhere. My first occurrence started with the worse pain in my leg and ankle joints but also in my shoulders. I was started on 20 mg prednisone and like you said it was like a miracle happened within a few hours. Being diagnosed and starting treatment about a month ago sounds like you might be tapering too fast but I'm not a doctor and am just sharing my experience. The average starting dose for prednisone for PMR is 12.5 to 20 mg from what I've read. @dadcue and other members may also have some thoughts or suggestions for you from their experience with PMR.

There are many PMR discussions on tapering off of prednisone that you might find helpful. Here's a link that shows the discussions and member comments - https://connect.mayoclinic.org/search/discussions/?search=tapering%20prednisone.

With both of my occurrences of PMR I found it helpful to keep a daily log to help track my pain when I got up and what dose of prednisone I was taking. Do you keep a daily log for tracking PMR?

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1 reply
thereselefever | @thereselefever | 3 days ago

Good Morning:
I was diagnosed with PMR a year ago in July. I was put on 60mg of Prednisone and a weekly shot of Actemra. Over the course of a year and a half I have tapered to 6 mg, but when I go lower it isn't good. I reflection (which I have done a lot of) I probably had symptoms for a couple of years prior. What clues me into the idea that pain is PMR related is this: Small amounts of activity that I used to be able to do with no pain at all, now my muscles do not recover from that activity. Even using a can opener to open a can of tomatoes can elicit pain in my bicep that will last for hours.
I have had an upper and lower EMG to test my muscles and nerves for any other disease that might be going on, but there is not. The conclusion is that PMR is creating the weakness, numbness and tingling, and pain.

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mark2471 | @mark2471 | 3 days ago
In reply to @johnbishop "Hello @nothatkaren, Welcome to Connect. Good question and PMR does seem to sneak up on you..." + (show)
@johnbishop

Hello @nothatkaren, Welcome to Connect. Good question and PMR does seem to sneak up on you from nowhere. My first occurrence started with the worse pain in my leg and ankle joints but also in my shoulders. I was started on 20 mg prednisone and like you said it was like a miracle happened within a few hours. Being diagnosed and starting treatment about a month ago sounds like you might be tapering too fast but I'm not a doctor and am just sharing my experience. The average starting dose for prednisone for PMR is 12.5 to 20 mg from what I've read. @dadcue and other members may also have some thoughts or suggestions for you from their experience with PMR.

There are many PMR discussions on tapering off of prednisone that you might find helpful. Here's a link that shows the discussions and member comments - https://connect.mayoclinic.org/search/discussions/?search=tapering%20prednisone.

With both of my occurrences of PMR I found it helpful to keep a daily log to help track my pain when I got up and what dose of prednisone I was taking. Do you keep a daily log for tracking PMR?

Jump to this post

My symptoms began a full 6 months before diagnosis. I was dramatically better within 6 hours of a single dose of prednisone 20 mg. Have been tapering slowly over the last 10 months. Most studies suggest the risk of relapse is lowest if the total course of prednisone is 12 to 24 months. Still have mild discomfort in the shoulders on 4.5 mg prednisone, which, for reasons I cannot explain, is dramatically improved by swimming. Best wishes for an uneventful tapering and a lasting remission.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | 3 days ago
In reply to @mark2471 "My symptoms began a full 6 months before diagnosis. I was dramatically better within 6 hours..." + (show)
@mark2471

My symptoms began a full 6 months before diagnosis. I was dramatically better within 6 hours of a single dose of prednisone 20 mg. Have been tapering slowly over the last 10 months. Most studies suggest the risk of relapse is lowest if the total course of prednisone is 12 to 24 months. Still have mild discomfort in the shoulders on 4.5 mg prednisone, which, for reasons I cannot explain, is dramatically improved by swimming. Best wishes for an uneventful tapering and a lasting remission.

Jump to this post

Hi Mark @mark2471, Welcome to Connect. Thanks for sharing your experience. I also think exercise is important when you have PMR but we just have to not over do it to add to our PMR pain. Here is some information on the topic that I found helpful.

-- 3 Strategies for Coping with Polymyalgia Rheumatica (PMR):
https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr
Have you made any other lifestyle changes to help with the PMR?

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mark2471 | @mark2471 | 3 days ago

Hi John,
Thank you for this information. I have not found any other interventions, such as diet, vitamins, herbals, or exercises to be of benefit. Weight lifting has definitely caused worsening so I avoid that.
Best regards,
Mark

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nothatkaren | @nothatkaren | 2 days ago
In reply to @mark2471 "My symptoms began a full 6 months before diagnosis. I was dramatically better within 6 hours..." + (show)
@mark2471

My symptoms began a full 6 months before diagnosis. I was dramatically better within 6 hours of a single dose of prednisone 20 mg. Have been tapering slowly over the last 10 months. Most studies suggest the risk of relapse is lowest if the total course of prednisone is 12 to 24 months. Still have mild discomfort in the shoulders on 4.5 mg prednisone, which, for reasons I cannot explain, is dramatically improved by swimming. Best wishes for an uneventful tapering and a lasting remission.

Jump to this post

Thank you. I have found the information in this forum so helpful. I just want to get back to a normal life, and I actually now have hope that I might just get there.

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pdxmac | @pdxmac | 2 days ago

Good luck to you. I too had a long journey before PMR was finally diagnosed. If you are like most of us, you'll find that you are making progress and then have a setback. The journal is invaluable advice because you won't be able to figure out your own triggers without them. Even then it's a mystery but the more you can control your own destiny you'll feel better.
I just added a new tool to my arsenal and I'm hoping it helps. I had already changed workout routines, food, no alcohol, etc. The one thing I can't control is stress. Even everyday annoyances can ramp me up and cause setbacks. Meditation helps but only so much. I got a prescription for a low dose, non addictive anti anxiety medicine that is arriving today. I will only use it until I can kick the prednisone feed. Fingers crossed!
This forum is a godsend.

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mtr2601 | @mtr2601 | 2 days ago

Hi, yes, I believe my PMR was just the inflammation cup running over, so to speak. I had quite a bit of chronic joint inflammation for years before the PMR. I also had major gut issues with silent celiac disease. My inflammation marker (CRP) was over 100 at one point, it's been as low as 8 after 18 months of treatment but is starting to go up again. I'm now starting to develop heart problems from the chronic inflammation and the meds. For me it's genetics, old age, stress and a lifetime of not eating well. Im doing the best I can to mitigate these risk factors and the meds have helped me regain some sense of normality but its a fragile truce between the me I want to be and the war on my body. Currently on 2.5mg Prednisone and 200mg Hydroxychloroquine. This forum has helped me to manage this disease in so many ways, I would be much worse off without the advice I have found here.

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Marilyn McFarland | @1942marilyne | 21 hours ago

I am 4 years into PMR. In February went on. Dexamethasone 1 and 1/2 mg Qd was on prednisone 5 mg but it did not handle flair. Will go down another 1/2 in January. Mayo here has been my go to for support. I do chiropractors and 2000 steps a day. Swim aerobics 3 times a week. I am 82.

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