Prednisone only mildly helpful for my PMR, is this common?

Posted by ldingwall88 @ldingwall88, Jun 6 8:36am

Hello, I was diagnosed with PMR about 5 days ago, symptoms started abruptly and severely on May 22. The pain has been migrating from shoulders to hips to knees and occasionally my right wrist. My doctor started me on 15mg prednisone and based on everything I've read, that should have been a game-changer. However, it doesn't seem to be working all that much: it takes my symptoms from a 7.5/10 to 5 or 5.5. and the relief only lasts a few hours. Is this normal? I have other chronic, auto-immune conditions but PMR is by far the most debilitating. I'd appreciate any advice/support/information you can offer. Thanks.

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Welcome @ldingwall88, You are right – for PMR prednisone is a game changer. I've had two occurrences of PMR and was treating for both with a starting dose of 20 mg. My pain was gone within 2 hours and didn't start coming back until the next morning. I do not think it's common for prednisone to not help with PMR pain unless the starting dose is too low, the PMR diagnosis is not correct or you have something else going on along with the PMR like GCA. The normal starting dosage of prednisone from what I've read is 12.5 mg to 25 mg. I think it's sometimes determined by body weight. Here some information on the topic:

— Polymyalgia rheumatica: An updated review: https://www.ccjm.org/content/87/9/549

You mentioned your doctor diagnosed the PMR. You might want to discuss your symptoms related to the dosage and still having pain with your doctor or possibly see if you can get a referral to a rheumatologist. Have you seen a rheumatologist?

REPLY
@johnbishop

Welcome @ldingwall88, You are right – for PMR prednisone is a game changer. I've had two occurrences of PMR and was treating for both with a starting dose of 20 mg. My pain was gone within 2 hours and didn't start coming back until the next morning. I do not think it's common for prednisone to not help with PMR pain unless the starting dose is too low, the PMR diagnosis is not correct or you have something else going on along with the PMR like GCA. The normal starting dosage of prednisone from what I've read is 12.5 mg to 25 mg. I think it's sometimes determined by body weight. Here some information on the topic:

— Polymyalgia rheumatica: An updated review: https://www.ccjm.org/content/87/9/549

You mentioned your doctor diagnosed the PMR. You might want to discuss your symptoms related to the dosage and still having pain with your doctor or possibly see if you can get a referral to a rheumatologist. Have you seen a rheumatologist?

Jump to this post

Thanks so much for your response. I live in a very rural area of western NC and getting in to see *any* doctor is a challenge. I got a referral to a rheumatologist about 2 hours away but can't get in for a month. Perhaps the issue is dosage? I'm overweight so perhaps 15mg is too low. I have a call in to my dr about going up to 20mg. If it's not dosage, it must be a diagnosis issue. I really hope I don't have to live with this pain for another month because I honestly don't know if I can take it. Thanks again for your help.

REPLY
@ldingwall88

Thanks so much for your response. I live in a very rural area of western NC and getting in to see *any* doctor is a challenge. I got a referral to a rheumatologist about 2 hours away but can't get in for a month. Perhaps the issue is dosage? I'm overweight so perhaps 15mg is too low. I have a call in to my dr about going up to 20mg. If it's not dosage, it must be a diagnosis issue. I really hope I don't have to live with this pain for another month because I honestly don't know if I can take it. Thanks again for your help.

Jump to this post

Another thought that I learned after my first round with PMR is lifestyle changes. It's not easy but it's well worth it and might make it easier in the long run.

"If you have PMR, it's important to make time for physical activity. You may need to avoid strenuous activities, but light exercise can help improve your symptoms and overall sense of well-being. Some exercises may also help you prevent side effects from medications you're taking." — Polymyalgia Rheumatica Diet: Do's and Don'ts – Healthline: https://www.healthline.com/health/polymyalgia-rheumatica-diet

REPLY
@johnbishop

Another thought that I learned after my first round with PMR is lifestyle changes. It's not easy but it's well worth it and might make it easier in the long run.

"If you have PMR, it's important to make time for physical activity. You may need to avoid strenuous activities, but light exercise can help improve your symptoms and overall sense of well-being. Some exercises may also help you prevent side effects from medications you're taking." — Polymyalgia Rheumatica Diet: Do's and Don'ts – Healthline: https://www.healthline.com/health/polymyalgia-rheumatica-diet

Jump to this post

That's really helpful, thanks. I've been forcing myself to walk and do arm & leg exercises. It's painful, but it definitely helps. I didn't know exercise could help with side effects, though. That's really intriguing for me considering I'm on a lot of medication.

REPLY

My initial start dose was 20mg prednisone and I felt relief quickly but had to go back and gt an injction of metylprednisolone just a couple of days later because the relief did not last. I see-sawed back and forth for several weeks and the doctor changed me to methylprednisolone which worked mudh better for me. Good luck with your journey. Evryone's jourey seems to be a bit different because everyone's body is different.

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On 20 mg. Prednisone started Jan 5/22, my symptoms were much as yours since Sept. of 2021. The pain was completly gone after a couple of days. Almost miraculous. My hand, which was claw-like and stiff, changed overnight to where I could reach over to my nightstand and pick up my phone. I was completely debilitated before Prednisone. Neck, shoulders, upper arms, right hand and then it also went to left hand. Hips, backs of upper thighs – all were pretty much a write-off. Never had such pain. With Prednisone at least 90% better.
Trying to taper down right now, which is very difficult, but I will persist. It does NOT seem normal that Prednisone would not help you imho, but everyone is different. Maybe a higher dose would help? I wish you well in this journey. You are not alone.

REPLY
@johnbishop

Welcome @ldingwall88, You are right – for PMR prednisone is a game changer. I've had two occurrences of PMR and was treating for both with a starting dose of 20 mg. My pain was gone within 2 hours and didn't start coming back until the next morning. I do not think it's common for prednisone to not help with PMR pain unless the starting dose is too low, the PMR diagnosis is not correct or you have something else going on along with the PMR like GCA. The normal starting dosage of prednisone from what I've read is 12.5 mg to 25 mg. I think it's sometimes determined by body weight. Here some information on the topic:

— Polymyalgia rheumatica: An updated review: https://www.ccjm.org/content/87/9/549

You mentioned your doctor diagnosed the PMR. You might want to discuss your symptoms related to the dosage and still having pain with your doctor or possibly see if you can get a referral to a rheumatologist. Have you seen a rheumatologist?

Jump to this post

Prednisone helped immediately. I have back and neck issues that are also helped by the prednisone.

REPLY
@ldingwall88

Thanks so much for your response. I live in a very rural area of western NC and getting in to see *any* doctor is a challenge. I got a referral to a rheumatologist about 2 hours away but can't get in for a month. Perhaps the issue is dosage? I'm overweight so perhaps 15mg is too low. I have a call in to my dr about going up to 20mg. If it's not dosage, it must be a diagnosis issue. I really hope I don't have to live with this pain for another month because I honestly don't know if I can take it. Thanks again for your help.

Jump to this post

I called in to the rheumatologist every day for a cancellation. Try doing that to get in earlier. The day I called twice was the day I got a cancellation 3 weeks sooner. Two of my blood tests showed high inflammation. I has tests before going to the rheumatologist. That helped with the diagnosis. My CRT and sed?? blood tests showed the inflammation. I have been doing a low carb and low sugar diet to help lower the inflammation.

REPLY
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