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.

Thanks everyone! I took my first dose of prednisone this morning. My doctor is starting me on only 15mg, so hopefully that will work. If it doesn't, he told me to call in a week's time and maybe he will up the dosage. I know I already have osteoporosis and am overdue for a bone scan. I haven't been for an annual for almost two years due to covid shutdowns. But that is definitely something to keep an eye on moving forward. I take 2,000 IU of vitamin D per day, but only about 500 mg of calcium; however, I eat a lot of calcium-rich foods such as yogurt, cheese, broccoli, etc.

I agree it can be very depressing. I used to be able to walk for miles, bend and kneel down in the garden with no problems, run upstairs, etc. -- I felt like I had the body of a 35-year-old. Not any more. I don't know if I'll ever get that degree of mobility back again (I am in my 60s now, so I know I have to be realistic), but I can adapt as long as the pain and stiffness go away. It definitely does impact your quality of life in a very negative way, and I'm sorry that you have all suffered through this as well. It certainly is no fun.

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@charlotte61

Thanks for your feedback, everyone -- it's much appreciated! My doctor called this morning to confirm a diagnosis of polymyalgia rheumatica, based on my blood test results. I'm just about to go pick up a prescription of prednisone to start treatment. I'm a little anxious about taking prednisone, especially as I already have osteoporosis, but I've been doing some research on diet and making a list of things to eat that will give me more calcium and vitamin D. I am also cutting red meat, processed foods, and margarine out of my diet. I don't have a rheumatologist at this time, and it would probably take months to get to see one. I'm also looking at exercise -- I love walking, gardening, swimming and I also attend Tai chi classes twice a week, although I've hardly been doing anything the past couple of weeks because of the pain, and the fact that too much exercise seemed to make me feel worse the next day. Thanks again for the info you have provided me with. This might be a long journey, but once the pain and stiffness have settled down, I look forward to getting my life back. I'm also wondering if physical therapy would help -- has anyone tried this as well?

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Best to you on this journey. Take it slowly!

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Thanks breinders! I will try. I am typically an impatient Type-A kind of person, so learning to slow down and pace myself is going to be a challenge.

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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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@charlotte61

Thanks for your feedback, everyone -- it's much appreciated! My doctor called this morning to confirm a diagnosis of polymyalgia rheumatica, based on my blood test results. I'm just about to go pick up a prescription of prednisone to start treatment. I'm a little anxious about taking prednisone, especially as I already have osteoporosis, but I've been doing some research on diet and making a list of things to eat that will give me more calcium and vitamin D. I am also cutting red meat, processed foods, and margarine out of my diet. I don't have a rheumatologist at this time, and it would probably take months to get to see one. I'm also looking at exercise -- I love walking, gardening, swimming and I also attend Tai chi classes twice a week, although I've hardly been doing anything the past couple of weeks because of the pain, and the fact that too much exercise seemed to make me feel worse the next day. Thanks again for the info you have provided me with. This might be a long journey, but once the pain and stiffness have settled down, I look forward to getting my life back. I'm also wondering if physical therapy would help -- has anyone tried this as well?

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Hi @charlotte61, since you've been doing TaiChi you might want to check out Dr. Loren Fishman's work and his Twelve Poses vs Osteoporosis, which you can find on YouTube.
I have osteoporosis, diagnosed after my GCA diagnosis. I have been taking alendronate for two years, (not wild about that). I started on 40 mg of Prednisone, then tapered off it in about a year and a half. My second DEXA scan was much like the first so the Prednisone didn't do more damage. I've been doing Dr. Fishman's yoga nearly everyday for ten months.

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Thanks Teri -- I will do! I have been doing Tai chi for over 20 years -- minus a two-year hiatus during covid lockdowns -- and I find it very helpful. I originally started with it because I needed help with stress and anxiety, but it has a positive effect on so many other areas of the body too -- including the bones. I'm hoping that once the prednisone really kicks in -- I'm already feeling a tad better -- I'll be able to go back to my twice-weekly Tai chi classes.

Currently, I am taking nothing for osteoporosis because everything I tried caused stomach cramps, and the six-monthly injections are too expensive (I have no health coverage).

I do worry about worsening osteoporosis with the Prednisone, but as soon as I'm feeling better, I'm going to tackle that issue as well. I have a naturopath as well as a GP, and draw on both fields of medicine whenever I have a health problem.

I believe it was Bette Davis who said that "growing old ain't for sissies." She wasn't wrong.

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@charlotte61

Thanks breinders! I will try. I am typically an impatient Type-A kind of person, so learning to slow down and pace myself is going to be a challenge.

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You can, as this lovely tends to makes you. But it's not all bad, that's for sure.

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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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@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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Hi Charlotte, I too wanted instant relief and I didn’t get it. After a few days I told my Dr. that I wasn’t experiencing the almost “instant” relief she predicted. I misspoke on my last entry. Dr. began me on 20mg at the start. She then upped my dosage to 30 mg which was remarkable. No more stiffness or pain! So I would recommend, if you don’t feel better soon, to ask your dr. to increase your dosage. I was on 30mg for a week, then 25mg for a week, then 20mg. for 2 weeks. Then I tapered 2.5mg for one week at a time until I was at 10mg (where I am now.) So far only experienced one little joint flare which went away. Now I will taper 1mg per month until I can hopefully wean from prednisone. It seems like a long road, but it feels like the slow, conservative approach is the best way (at least for me.) Good luck. Liz Ward

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@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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My symptoms, which were extremely severe, improved within a couple days of beginning Prednisone at 10 mg/day down to about 4 on a scale of 10. The dosage was increased, at my request, after a couple days to 20 mg and the pain level went down to 2-3/10. Unfortunately that turned out not be enough, as I had a serious relapse a few weeks later, and the ER doctors placed me on 60 mg/day. That was very effective, within hours, in getting rid of almost all the pain, albeit had some pretty debilitating side effects. It is very hard to sleep after taking 60 mg of Prednisone.

From what I've heard, most PMR sufferers receive quite a bit of relief from Prednisone within a few days and at most a week. The dosage does sometimes have to be adjusted to fully relieve the inflammation, but even relatively low dosages should offer unmistakeable improvement within less than a week, and usually a few days. My understanding is that if this does not happen, the PMR diagnosis may have to be questioned.

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