Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

I am on a 20 mg prednisone regime. Wondered if anyone has the following reaction to taking the drug: Within 1 hour my muscles tighten and I feel rigid which lasts a good portion of the day? Could it be primal myopathy, drug induced? The problem is what is the option since I need the drug for my PMR?

Jump to this post

@glendal, I don't think I've ever heard of a side effect of prednisone being muscles tightening up. It took away any pain and stiffness I had within hours of my taking the prednisone for both my occurrences of PMR. Have you discussed it with your rheumatologist?

Jump to this post

Hi, John. Boy, this just gets worse and worse. 'Spent the last 3 hours on the phone with my insurance and doctors, including speaking to Mayo here in Florida. I was told that I can't get a referral to Mayo because my GP has never heard of PMR and doesn't think it's a thing. I talked to Mayo, 'said I was willing to pay out of pocket and they told me I'd need a $5000 deposit. When I said I'd raise the cash to just pay out of pocket before I become permanently disabled, the they said "Oooh! Right. Yeah we can't actually take you either unless you have a referral." This. Is. Insane.

Jump to this post

I'm a year late on this, but I had the same experience. I like my doctor and have had him for years, but on this issue I suffered for a year while every test was fruitless, I discovered PMR on the internet and it took 6 more months to convince my doctor to ignore the Sed rate test and send me to a Rheumatologist! I think the real issue was insurance coverage. After turning 65 and getting Medicare with a good Supplement Plan, suddenly I had a Rheumatologist! The overall cost was far less than the $5000 you mentioned. On my first visit he listened to my story, asked a few questions, inspected my hands, and took some x-rays. Then said, "I agree with your prognosis!". By then I had given up my job as a volunteer softball coach at the local College, moved like I was 98, and hurt like hell when I had to drive, or even get out of bed and get dressed. Yet as a single parent, I still drove my daughter to school and back daily and did all of the shopping, cooking, etc. I have been on prednisone for a year and a half and am taking 6mg a day, (3 morning / 3 night). I am dropping it down 1 mg per month, (night dose first) accepting mild discomfort. My Rheumatologist said that daily dosage under 5 mg per day has shown no evidence of adverse effects. It has given me back my life. I have been clearing land, driving a tractor, and running a large chainsaw 3 to 4 days a week in hopes of building a new home!

Jump to this post

Hello all. My name is Jeff from Australia and I have recently been diagnosed with PMR. It likely started around December 2020 although may have been lurking around earlier. From Christmas, my joints started to become painful and stiffen, particularly in the hips, knees and shoulders. It eventually progressed to elbows and even my bicep muscles. I saw my GP on Jan 21st as the stiffness and pain were starting to impact my routines/life. Due to the difficulty of getting into my regular GP again I went to a “walk in” GP to have blood tests done. These came back with a slightly high CRP (55) and as we were waiting on other tests it was another five days before I was called back in for them. That GP said he didn’t know what it was so I said well are you saying I have to live with it and he shrugged his shoulders. Needless to say I won’t be seeing them again. In the meantime I tried two acupuncture sessions to no avail. This eventually led to finding (thanks to my wife) information about PMR and pretty much self diagnosed myself. At this point I could barely walk and couldn’t dress myself. I printed a Mayo document on PMR to take into my GP on the 8th February appointment in case she didn’t come up with the possibility of PMR. Fortunately she did and put me on Prednisolone, 50mg. Within five hours I was close to walking semi normally. As I had been on Prednisolone many years ago for an unrelated issue I was aware of its hazards. Although the GP said to take 50mg for three days I decided to drop the second days dose to 25mg and phone the doctor. I already had the dosage and weaning schedule so I suggested to her to start the following day on 15mg for three weeks then 12.5mg and so on. Into my second week on 15mg now and I am getting up with only slight discomfort in hips and shoulders for the first hour or so. I am increasing my vitamin D3 and still taking Caltrate bone and muscle daily with vitamin B12 twice a week. See a rheumatologist in June as that is the earliest I can get into one. I will also talk with the GP regarding taking Fosamax. Thanks for bearing with me with the long post.

Jump to this post

Hello @dudeofdad, Welcome to Connect. I'm glad you found this discussion and shared your experience. It's good to hear you are doing well on tapering off of prednisone slow and easy. My first occurrence took 3 and half years to taper off of prednisone and the last six months I went back and forth between 1 mg and 1/2 mg until I was finally able to stop taking it without having the pain and stiffness return.

I kept a daily dosage and pain level log for both of my occurrences of PMR and it really helped me taper off of prednisone the second time around with PMR which was 6 years after it went into remission from the first occurrence. Are you keeping a daily log of your dosage and pain level?

Jump to this post

Hello all. My name is Jeff from Australia and I have recently been diagnosed with PMR. It likely started around December 2020 although may have been lurking around earlier. From Christmas, my joints started to become painful and stiffen, particularly in the hips, knees and shoulders. It eventually progressed to elbows and even my bicep muscles. I saw my GP on Jan 21st as the stiffness and pain were starting to impact my routines/life. Due to the difficulty of getting into my regular GP again I went to a “walk in” GP to have blood tests done. These came back with a slightly high CRP (55) and as we were waiting on other tests it was another five days before I was called back in for them. That GP said he didn’t know what it was so I said well are you saying I have to live with it and he shrugged his shoulders. Needless to say I won’t be seeing them again. In the meantime I tried two acupuncture sessions to no avail. This eventually led to finding (thanks to my wife) information about PMR and pretty much self diagnosed myself. At this point I could barely walk and couldn’t dress myself. I printed a Mayo document on PMR to take into my GP on the 8th February appointment in case she didn’t come up with the possibility of PMR. Fortunately she did and put me on Prednisolone, 50mg. Within five hours I was close to walking semi normally. As I had been on Prednisolone many years ago for an unrelated issue I was aware of its hazards. Although the GP said to take 50mg for three days I decided to drop the second days dose to 25mg and phone the doctor. I already had the dosage and weaning schedule so I suggested to her to start the following day on 15mg for three weeks then 12.5mg and so on. Into my second week on 15mg now and I am getting up with only slight discomfort in hips and shoulders for the first hour or so. I am increasing my vitamin D3 and still taking Caltrate bone and muscle daily with vitamin B12 twice a week. See a rheumatologist in June as that is the earliest I can get into one. I will also talk with the GP regarding taking Fosamax. Thanks for bearing with me with the long post.

Jump to this post

Good morning sounds like my onset. I’d like to know if you had a flu shot before this came on. Best of luck to your recovery

Jump to this post