Do I have polymyalgia rheumatica?

Posted by charlotte61 @charlotte61, Jul 24, 2023

Hi everyone -- I'm new here. I'm a 62-year-old woman who up until a month ago was fit, active, and pain-free. Then I started getting pain and stiffness in the backs of my thighs, which I at first put down to simple muscle strain. But the pain and stiffness have since spread to my hips and knees, shoulders, neck and arms. Exhaustive online research suggests I may have polymyalgia rheumatica -- it's what my symptoms most closely point to. I feel as if I have aged 20 years in one month, and am feeling very depressed and anxious. This just isn't me. I finally got in to see my doctor this morning, and he has ordered an array of blood tests. He also prescribed Tylenol 3 to help with the pain, since OTC pain relievers aren't really doing the job. My pain and stiffness are at their worst in the morning -- some days, I can barely get out of bed and get dressed. Often, the pain eases as the day goes on, but on other days -- including today -- it doesn't let up much. I don't know how long I'll have to wait for a diagnosis -- depending on what the bloodwork shows, if anything, I may have to go for imaging tests and might have to wait weeks for those. In the meantime, what do you do to help relieve your pain so that you can function? I know that prednisone is the typical treatment for this disease, but until I have been given a firm diagnosis, that won't be an option. Thanks in advance for any advice!

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

@charlotte61

Another question from this PMR newbie. How long does it take the prednisone to really kick in, and does it remove all pain and stiffness, or only part of it? Maybe I'm being too impatient...it's only been just over 24 hours since I took my first dose. I felt better yesterday than I had in weeks, but this morning my leg and arm muscles were sore again -- maybe partly because I didn't sleep well last night and was feeling tense and stressed. I took my second dose of prednisone about five hours ago, and can still feel pain and stiffness in my arms and legs. I've read that some people get instant relief, but other research I've done says it can take a few days to a week for the pred to really start working. My doc has me taking my whole dose in the morning with breakfast.

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It can take a few days, but if you're not experiencing full relief and are on a lower dose, I'd consider talking to your doctor and asking about increasing the dose. I know you mentioned your dose before, but can't remember what you started on... I think my dad started on 20 mg and ultimately had to go to 30 mg. The goal is to quash the inflammation (if you're positive for inflammatory markers) and almost all the pain, be stable for a while and then start a taper that hopefully keeps you mostly stable. If those dose isn't high enough, it may be harder for you to get to that point.

This is where my dad's rheumatologist says sorting it out can be "more of an art than a science." I think she means it's more like following what your body is saying... And then I tell her: "But that's the problem; I don't always understand what it's telling me to do..." >_<

There are a few people here in the group who've found splitting the dose helps them. That didn't work for my dad, because the prednisone really affected his sleep, so he has to take it all in the morning.

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@emo

It can take a few days, but if you're not experiencing full relief and are on a lower dose, I'd consider talking to your doctor and asking about increasing the dose. I know you mentioned your dose before, but can't remember what you started on... I think my dad started on 20 mg and ultimately had to go to 30 mg. The goal is to quash the inflammation (if you're positive for inflammatory markers) and almost all the pain, be stable for a while and then start a taper that hopefully keeps you mostly stable. If those dose isn't high enough, it may be harder for you to get to that point.

This is where my dad's rheumatologist says sorting it out can be "more of an art than a science." I think she means it's more like following what your body is saying... And then I tell her: "But that's the problem; I don't always understand what it's telling me to do..." >_<

There are a few people here in the group who've found splitting the dose helps them. That didn't work for my dad, because the prednisone really affected his sleep, so he has to take it all in the morning.

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Thanks so much, emo -- your info is helpful and reassuring! My doc has started me on only 15mg, all to be taken in the morning. I'll wait a few days and see how things progress, and then if I don't see much improvement, give him a call to see if my dose needs to be raised. I also have a muscle relaxant to take before bed, but I didn't take it last night, which is likely why I didn't sleep well and ended up with more pain this morning.

I don't think splitting the dose would work for me either. It doesn't take much to throw off my sleep cycle, and I've suffered from insomnia in the past, due to anxiety/depression issues. Not being able to sleep just makes me feel ten times worse about everything, so I will stick to a morning dose for the prednisone.

Thanks again!

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Thank you, redboat and lizward46! I'm sorry you both went through such a difficult time before you were able to get your symptoms under control.

I certainly feel better than I did earlier this week, when I couldn't get out of bed without yelling in pain, and was barely able to walk. Right now, all I'm experiencing is some stiffness and tenderness in my thighs and upper arms -- it's still limiting, but nowhere near as debilitating as before. I managed a 20-minute walk earlier this afternoon and am going to try another shortly, now that it's stopped raining.

The doctor said I could take some Tylenol if need be, so I took a couple after lunch. I'm also taking turmeric with my dinner to hopefully further help with calming inflammation.

My naturopath is on holidays this week, but I'm touching base with her on Monday to see what else she can suggest that might help, and will share her info here, even though I know everyone is different and needs to follow their own doctors' advice.

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@charlotte61

Another interesting bit of info I stumbled across during my intensive online research into this condition. Apparently, cases of polymyalgia rheumatica have been popping up in people who may have had too many covid vaccines. My symptoms started about a month after my most recent vaccine...and that was my sixth shot. So now I'm wondering if it pushed my immune system into overdrive. To stay on the safe side, I probably won't have any more covid vaccines, although I will discuss this with my doctor too.

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I agree with you. I think there is a link for some people with the Covid vaccine. Mine came after my fourth shot - seven days later I ached all over.

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Hello! My name is Debbie, and I am so glad to meet everyone who is suffering from PMR like myself, A few months ago i started to have pain in both of my upper arms and my legs. I'm glad to say that the leg pain left but the arms did not. Over the next several weeks the pain intensified to the point that I could not get off a chair or bed. I could not brush my hair or wash it and i needed help getting dressed. As you all know it's very frighting. I did what we all do with over-the-counter meds and that helped a lot. It was not going away, and I was getting depressed not knowing what this condition was. I finally went to a doctor, and they told me I had PMR. She put me on 5 days of 25mil of Prednisone. Following that,4days, then 3,2,1. With in hours the pain started to go away. What a relief. I was thinking, this is great! it will be cured. Was I fooled; the pain came back as soon as i stopped the medication. Now round 2 of meds. Doing research and thinking of acupuncture. Has anyone tried this ?

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@debbieo123

Hello! My name is Debbie, and I am so glad to meet everyone who is suffering from PMR like myself, A few months ago i started to have pain in both of my upper arms and my legs. I'm glad to say that the leg pain left but the arms did not. Over the next several weeks the pain intensified to the point that I could not get off a chair or bed. I could not brush my hair or wash it and i needed help getting dressed. As you all know it's very frighting. I did what we all do with over-the-counter meds and that helped a lot. It was not going away, and I was getting depressed not knowing what this condition was. I finally went to a doctor, and they told me I had PMR. She put me on 5 days of 25mil of Prednisone. Following that,4days, then 3,2,1. With in hours the pain started to go away. What a relief. I was thinking, this is great! it will be cured. Was I fooled; the pain came back as soon as i stopped the medication. Now round 2 of meds. Doing research and thinking of acupuncture. Has anyone tried this ?

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Welcome @debbieo123, Unfortunately PMR is not one of those 1 and done conditions. Once you start prednisone and the pain goes away quickly, that is pretty much how most doctors and rheumatologists know that you have PMR. Then your journey begins and you have to listen to your body while you are working on a plan or schedule to taper off of prednisone. If you taper too fast, the pain will come back. My first time with PMR took 3-1/2 years to taper off. The second time took 1-1/2 years to taper off. Here are a few references that explain the treatment.

--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429

--- 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative:
https://ard.bmj.com/content/74/10/1799
You might find the following discussions helpful also:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
--- Acupuncture and PMR: https://connect.mayoclinic.org/discussion/acupuncture-and-pmr/

Have you tried making any lifestyle changes (diet, exercise, etc.) to help with the PMR symptoms?

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@debbieo123

Hello! My name is Debbie, and I am so glad to meet everyone who is suffering from PMR like myself, A few months ago i started to have pain in both of my upper arms and my legs. I'm glad to say that the leg pain left but the arms did not. Over the next several weeks the pain intensified to the point that I could not get off a chair or bed. I could not brush my hair or wash it and i needed help getting dressed. As you all know it's very frighting. I did what we all do with over-the-counter meds and that helped a lot. It was not going away, and I was getting depressed not knowing what this condition was. I finally went to a doctor, and they told me I had PMR. She put me on 5 days of 25mil of Prednisone. Following that,4days, then 3,2,1. With in hours the pain started to go away. What a relief. I was thinking, this is great! it will be cured. Was I fooled; the pain came back as soon as i stopped the medication. Now round 2 of meds. Doing research and thinking of acupuncture. Has anyone tried this ?

Jump to this post

Welcome, and glad you found the group while you’re going through this. @johnbishop provided some great resources if you’re interested in learning more about treating PMR.

Unfortunately, PMR requires long-term use of prednisone until your pain and fatigue is completely or almost complete resolved, before you’ll need to start what’s likely to be a long and slow taper to get off the prednisone.

My father was diagnosed with PMR in May 2022. His highest prednisone dose was 30 mg, and he’s currently down to 6.25 mg.

Doctors will sometimes prescribe what sounds like a prednisone pack or low-moderate dose of prednisone to confirm a diagnosis of PMR—if you have immediate relief and meet the other criteria it’s very likely you have it. But the pain comes right back if you speed through the taper like that or stop the medication.

May I ask, did you see your PCP or other specialist? If you haven’t yet and if it’s an option, you may want to establish with a rheumatologist. They would have the most experience with this condition, but depending on your area, the wait times can be long, so some PCPs can and do help manage the condition.

What kind of instructions did your doctor give you after you completed the prednisone RX, and have you had a chance to talk with them yet?

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If you are off prednisone and symptoms are flaring it would be timely
to have the blood work up done. Hope you can find a rheumatologist.

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@johnbishop

Welcome @debbieo123, Unfortunately PMR is not one of those 1 and done conditions. Once you start prednisone and the pain goes away quickly, that is pretty much how most doctors and rheumatologists know that you have PMR. Then your journey begins and you have to listen to your body while you are working on a plan or schedule to taper off of prednisone. If you taper too fast, the pain will come back. My first time with PMR took 3-1/2 years to taper off. The second time took 1-1/2 years to taper off. Here are a few references that explain the treatment.

--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://ard.bmj.com/content/early/2023/02/23/ard-2022-223429

--- 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative:
https://ard.bmj.com/content/74/10/1799
You might find the following discussions helpful also:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
--- Acupuncture and PMR: https://connect.mayoclinic.org/discussion/acupuncture-and-pmr/

Have you tried making any lifestyle changes (diet, exercise, etc.) to help with the PMR symptoms?

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Thank you John for responding so quickly. Yes, I now swim or kinda swim most every day. I now eat non-flamatory foods. I am pro-aactive with this condition. I am thankful for the links you sent and will review them today for sure. I just contact my naturopathic doctor for her advise on acupunture and hurbs. Just waiting to hear back. Will let you know.

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@izzie1020

I agree with you. I think there is a link for some people with the Covid vaccine. Mine came after my fourth shot - seven days later I ached all over.

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Yes, I think you're right, izzie1020. Sorry this has happened to you too. I won't be having any more covid vaccines. If there's an uptick in cases again this fall and winter, I'll just limit my exposure to people, do everything I can do stay healthy, and keep masking.

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