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.

@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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Sorry this happened to you too, Debbie. I agree, it's frightening and depressing. I live alone, so have no one to help me, which makes it even more stressful. I'm glad the prednisone worked so quickly for you. It's not really working that well for me, even after three days. It's taken the edge off the pain, but that's about it -- my arms and legs still hurt, which means I have to take Tylenol too. But then I am only on 15 mg of prednisone -- I may need a higher dose. I'll be calling my doc next week to ask him about this if I don't see some marked improvement soon. I'm very disheartened right now, as I was really expecting to be feeling some significant relief by now.

I'm considering acupuncture, but haven't tried it yet. I'm also thinking about physical therapy. I'm worried that I'm going to start losing muscle mass because I'm only getting a fraction of the exercise I used to before this all started.

Unfortunately, PMR can last years and there's no cure. It may go into remission, but you can also get flareups. I'm trying hard to modify my lifestyle -- improve my diet, drink more water, deal more effectively with stress, practice deep breathing, meditation, etc., and making sure I get some exercise every day, even if it's just a few short walks. I'm also trying to achieve a positive attitude, but it's hard.

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15mg prednisone didn't do it for me. The morning after the first dose, no difference. The second morning and subsequently, it took the edge off the initial pain to the way I tended to feel after being up 20 or 30 minutes.

After a week, my dosage was upped to 25mg. Again no change the morning after the first dose. However, after that, I noticed considerable improvement in mobility and pain in the morning. After a week, it was down to very tolerable discomfort and I could dress with relative ease. Since then I've felt pretty much normal other than some morning stiffness. Tapering has just started, so we shall see...

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@charlotte61

Sorry this happened to you too, Debbie. I agree, it's frightening and depressing. I live alone, so have no one to help me, which makes it even more stressful. I'm glad the prednisone worked so quickly for you. It's not really working that well for me, even after three days. It's taken the edge off the pain, but that's about it -- my arms and legs still hurt, which means I have to take Tylenol too. But then I am only on 15 mg of prednisone -- I may need a higher dose. I'll be calling my doc next week to ask him about this if I don't see some marked improvement soon. I'm very disheartened right now, as I was really expecting to be feeling some significant relief by now.

I'm considering acupuncture, but haven't tried it yet. I'm also thinking about physical therapy. I'm worried that I'm going to start losing muscle mass because I'm only getting a fraction of the exercise I used to before this all started.

Unfortunately, PMR can last years and there's no cure. It may go into remission, but you can also get flareups. I'm trying hard to modify my lifestyle -- improve my diet, drink more water, deal more effectively with stress, practice deep breathing, meditation, etc., and making sure I get some exercise every day, even if it's just a few short walks. I'm also trying to achieve a positive attitude, but it's hard.

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I'm hoping things either turn around quickly or that you'll be able to work out a plan with your doctor. I think we talked about this before, but maybe you can do labs again and that could help you feel more confident about whether or not to up the prednisone dose. It does sound like that may be the next step though.

My dad I think started at 20 mg (?) I can't quite remember. It worked really well at first, but didn't last. He had a serious health problem come up that may have contributed to a flare and ended up needing to go up to 30 mg.

He also did PT and OT, for the other health problem that came up, but it helped with the PMR also. It's just that you'd want to find a PT who really understands chronic pain and fatigue because a body/brain in chronic pain responds very differently to exercise. Some of his PTs (he was in a rehab hospital) really didn't get it. They'd push him too hard because he was "strong enough" but then he'd crash because it was too much.

I didn't have much experience with OT, but it was great because one of his main symptoms is fatigue, and they were able to help with tips and tricks for "energy management" and ways to move around and do the things he wanted to do with less pain and fatigue.

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Ditto for me Charlotte 61!

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@emo

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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Thank your reponding. In answer to your question. I am glad to say that I have a team of doctors that are working with me. I called them as soon as the pain came back. They gave me the same meds to take and the pain left with in hours. I have a phone appointment with them this thursday and an office visit following a few weeks after. Time will tell as Im taking one day at a time. Im open to seeing anyone that can help me. Im doing my research for sure. Glad to hear that your dad is at the end of this painful time,

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@charlotte61

Sorry this happened to you too, Debbie. I agree, it's frightening and depressing. I live alone, so have no one to help me, which makes it even more stressful. I'm glad the prednisone worked so quickly for you. It's not really working that well for me, even after three days. It's taken the edge off the pain, but that's about it -- my arms and legs still hurt, which means I have to take Tylenol too. But then I am only on 15 mg of prednisone -- I may need a higher dose. I'll be calling my doc next week to ask him about this if I don't see some marked improvement soon. I'm very disheartened right now, as I was really expecting to be feeling some significant relief by now.

I'm considering acupuncture, but haven't tried it yet. I'm also thinking about physical therapy. I'm worried that I'm going to start losing muscle mass because I'm only getting a fraction of the exercise I used to before this all started.

Unfortunately, PMR can last years and there's no cure. It may go into remission, but you can also get flareups. I'm trying hard to modify my lifestyle -- improve my diet, drink more water, deal more effectively with stress, practice deep breathing, meditation, etc., and making sure I get some exercise every day, even if it's just a few short walks. I'm also trying to achieve a positive attitude, but it's hard.

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So sorry Charlette that you did not get the relief you so need with pred. Yes, i agree you need to up the dose to at least 25mil like I have. I dont know what I would do with out this drug. I am also getting reflexology and message and that does help. Every morning I run to the community pool as my exercise to keep my muscles in shape. Somthing about water the distresses your emotions. My belief is to take one day at a time and do the best you can do. But please tell you doctor that you are not satisfied with that dose and I am sure he will up it for you. Let me know how it goes for you.

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74 yo male, quite healthy until the 4th Covid shot...? Shortly afterwards same symptoms appeared but much worse. Could not put on the socks, pants, shirt, practically an invalid until I found a good rheumatologist. He immediately prescribed prednisone 20 mg which completely eliminated the pain(s). now I control the PMR with 10mg daily. Prednisone seems to be the only (unfortunately) successful medication for the PMR, accept it if you want to live without the pains, no other solution to my knowledge is available so far. Prednisone, however, does affect the liver so get a monthly blood test. Good luck.
Marty

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@charlotte61

Sorry this happened to you too, Debbie. I agree, it's frightening and depressing. I live alone, so have no one to help me, which makes it even more stressful. I'm glad the prednisone worked so quickly for you. It's not really working that well for me, even after three days. It's taken the edge off the pain, but that's about it -- my arms and legs still hurt, which means I have to take Tylenol too. But then I am only on 15 mg of prednisone -- I may need a higher dose. I'll be calling my doc next week to ask him about this if I don't see some marked improvement soon. I'm very disheartened right now, as I was really expecting to be feeling some significant relief by now.

I'm considering acupuncture, but haven't tried it yet. I'm also thinking about physical therapy. I'm worried that I'm going to start losing muscle mass because I'm only getting a fraction of the exercise I used to before this all started.

Unfortunately, PMR can last years and there's no cure. It may go into remission, but you can also get flareups. I'm trying hard to modify my lifestyle -- improve my diet, drink more water, deal more effectively with stress, practice deep breathing, meditation, etc., and making sure I get some exercise every day, even if it's just a few short walks. I'm also trying to achieve a positive attitude, but it's hard.

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Does anyone have any experience with acupuncture? I find I cannot tolerate sugar, salt or I have a reaction.

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@mrovka49

74 yo male, quite healthy until the 4th Covid shot...? Shortly afterwards same symptoms appeared but much worse. Could not put on the socks, pants, shirt, practically an invalid until I found a good rheumatologist. He immediately prescribed prednisone 20 mg which completely eliminated the pain(s). now I control the PMR with 10mg daily. Prednisone seems to be the only (unfortunately) successful medication for the PMR, accept it if you want to live without the pains, no other solution to my knowledge is available so far. Prednisone, however, does affect the liver so get a monthly blood test. Good luck.
Marty

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Thanks for commenting, mrovka49 -- I'm coming across more instances of people who have developed PMR after Covid vaccines, which is very concerning to say the least.

It does seem that prednisone is the only effective treatment, although I'm going to do my best not to have to go above 15mg a day if I can help it. I'm learning as I go, and I find that watching what I eat, controlling stress, getting adequate sleep along with some exercise, are also important. Given the long term effects of Prednisone -- from bone thinning to diabetes to infections -- I really hope I can prevent having to go on a higher dose.

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@debbieo123

So sorry Charlette that you did not get the relief you so need with pred. Yes, i agree you need to up the dose to at least 25mil like I have. I dont know what I would do with out this drug. I am also getting reflexology and message and that does help. Every morning I run to the community pool as my exercise to keep my muscles in shape. Somthing about water the distresses your emotions. My belief is to take one day at a time and do the best you can do. But please tell you doctor that you are not satisfied with that dose and I am sure he will up it for you. Let me know how it goes for you.

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Thanks Debbie -- and I'm glad the 25 mg is working for you! I agree that taking things one day at a time is the best approach. Looking ahead and wondering how many months or years this is going to last is just too overwhelming.

I think it's just going to take some time for me. I was feeling very discouraged yesterday, but today was my best day yet. Still stiff and sore in the mornings, but this is the first day in almost six weeks that I didn't have significant leg pain. So maybe it's just taking the 15 mg of Prednisone a little longer to work. Given the side effects of long term Prednisone use, I really don't want to go over 15 mg a day if I can help it. I already have osteoporosis and don't want to make it worse. I'm trying to watch what I eat, get some light exercise every day -- and most importantly, keep my stress levels low, as stress seems to really make it a lot worse. Deep breathing exercises and meditation are very helpful. I used to go swimming at the local pool before the pandemic, and am thinking of returning -- they have a nice warm therapy pool there that I think would be very helpful.

I hope things continue to go well for you!

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