PMR diagnosed 2017. My CRP — which always aligned with my PMR pain— has been normal for over a year now. I’m on 2mg prednisone.
— To see whether I may be in actual PMR remission, I started a slow 7-week reduction to 1.5 mg pred (from 2mg) three weeks ago. I see my endocrinologist soon and will ask for the basic cortisol test to check my adrenals.
— My left hip osteoarthritis progressed to bone on bone and the X-ray confirming this was December 2022.
— Pain below my butt on both sides started October 2022. The sensation is like really tight muscles. It makes stairs difficult. Driving the car is uncomfortable. Getting up after sitting hurts. This reminds me of my early days of PMR but I’ve tested a single 200mg ibuprofen a few times along with mild stretching and it reduces the pain. And ibuprofen of course never helped my PMR pain.
The pains below my butt are worse than, and restrict my movement more than the hip joint pain. I asked my rheumatologist about it and she essentially said who knows. Could be PMR. Could be from the osteoarthritis. No other advice except try a yoga child pose …
I know many of you lovely people not only have PMR but also osteoarthritis and other pain syndromes. Any ideas of what this could be and what would help? Also, I’ve never used the word butt so many times in a post 🤣
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SusanEleven
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Could be lots of things -so probably more investigation required
piriformis muscles -do you have pain in thighs as well - very often related to PMR
Osteoarthritis - any chance of getting other hip X-rayed as well. What’s being done about the one that’s bone-on-bone?
As for child pose, it will help stretch the muscles around that area, but unless you have done it before make sure you are doing it correctly - if you attempt it too strongly you may end up making things worse. So any chance of a physio appointment.
There are plenty of exercises online -but supervised would better especially as you’re not sure what it is.
There is also osteoarthritis in the other hip but it’s mild. No progression since an X-ray five years ago. No pain. No stiffness.
I met with an orthopedic surgeon about the bone-on-bone hip. He says nothing will help except a hip replacement. We discussed that I am P ANCA positive w/rising antibodies (6 years) and am waiting for the world-famous Boston hospital that has promised to review my rheumatology records and imaging and see me. If I am diagnosed with ANCA vasculitis the hip goes on hold because autoimmune vasculitis treatment will keep me immune suppressed for some time. Such fun times.
I will definitely push my primary cate doctor or my rheumatologist (whoever is faster) to write up the referral for physio.
I was told that I had gluteal tendonitis after an MRI. I was given various exercises butt they didn't help much. Child's Pose hurts my shoulders butt doesn't ease my butt much.
I’ll look up gluteal tendinitis. And thank you for letting me know about the child’s pose. I do recall she said to do the “wide” version but I think I’ll wait until I see how long it takes for a physio appointment. Health care in the US is very broken.
I am just getting over a flair of PMR and it lasted 5 months. It took me that long to taper from 20 mg. down to zero. Have been totally off prednisone for one month. Am feeling a little tightness is the backs of knees, and some hip discomfort when walking. I am 76 and have been stretching with my yoga instructor three times a week and try to walk 10,000 steps a day. I definitely have osteoporosis AND scoliosis, in my neck area but that has never given me any trouble. Wondering if I should go on a maintenance dose of 1 mg. prednisone for awhile and see if that helps the knee and hip. Of course, I probably need to go to DOC so he can check CRP but wondered what you thought about the 1mg. prednisone maintenance.many thanks
thanks for your reply. will give it some more time to see what’s going on. I just do not want to “re visit” fhe urinary “issues” that pred caused. Sheesh!!
Hi Susan, I totally get what you are saying! I also have bone on bone arthritis and and due a hip replacement by April. I was diagnosed with PMR September 2021 and was started on 15mg of Pred. After around 4 days the pain had gone! I began to taper very slowly and after just over a year half mg. My Dr advised me to go to 1mg as he was dubious of 1/2. A few weeks later I had the most terrible pain in both my legs I could hardly walk and had to get a stick. The pain was terrible and made me very low in mood. I then began reading stuff on this site and it has been so helpful I can not tell you! Esp DL who is amazing! Anyway I upped the Pred to 7 then 9 which I am currently taking now. I still get pain of course because of my hip but no longer need a cane and can get about ok I’m still working. If I was you I would up my dose and see what happens after a week or so as it defyhelped me no end! Good luck, this is an awful condition.
I get the same sort of pain sometimes - especially if I bend to pick something up from the floor or touch my toes. It comes and goes and it was there at the start of PMR. I mostly ignore it but a physio this week told me I have tight piriformis muscles. Stretching seems to be his answer. I have had to stop somatic movements (even though they are small and slow) because it hurts the lower back. Maybe you need to see a physio and somehow find out what suits you.
my PMR pain in my Butt area has been with me constantly as if I’m sitting on a hot wire right where my legs attach to my fanny. I’m on 9 mg and facing spinal fusion in about six weeks but this sensation is definitely PMR.
Maybe go up to five mg for a week and see if the pain goes away.
Others will give you better advice. Hope it goes away soon.
I get occasional trochanteric bursitis in one or both hips. It feels like spikes are being driven in when I walk. I treat is with ice, rest and anti-inflammatory medication (with food and for a limited time), followed by appropriate exercises which can be found on the internet.
FYI, the doctor I saw was determined to blame it on osteoarthritis which I have in other joints, and told me I had to walk through the pain. NOT!! I did my own research and things quickly improved once I started treatment for bursitis. The first thing recommended is rest,
I had that when between 15-20mgs and found driving after about half an hour to an hour really uncomfortable. I found tensing and relaxing the gluteals helpful. I haven't had it since. Who knows if it is the pred or the PMR!
I’ve had a similar pain in a much more mild form on and off in my PMR years. I feel like this got so much worse after a long drive (6 hours) I took last October.
Thank you all for posting replies with so much good information. It does seem like there are a number of reasons this could be happening.
I contacted my primary care doctor about getting a referral for a physio evaluation and it’s the usual story that I must see him first. Of course he’s not available for ages so instead I get a nurse practitioner and hopefully don’t end up in an endless circle.
We can refer ourselves to a physio but they just send a sheet of exercises - last time I filled in a questionnaire about pain in my legs they sent me neck and shoulder exercises. Pretty useless
As an update, I got 13 PT appointments approved with a wonderful physical therapist. Such a comprehensive evaluation! We stretched those appointments out across 3 months and saved one in case something pops up later. I had piriformis syndrome, bursitis and the fallout from my two arthritic hips, one being bone on bone
I improved dramatically. I do my exercises at least 5x per week. I don’t need my cane every day. My routine is manageable— so it’s not daunting to continue.
Speaking of updates, I’ve got a post on here from months ago if anyone is curious. I was DX with PMR in 2016, a DX my former rheumatologist did not budge from for 7 years despite clues to the contrary. In 2023 a rheumatologist at a major teaching hospital with a lot of specific experience said I’d been misdiagnosed. I have an ANCA vasculitis. My DX is GPA. Granulomatosis with Polyangitis. I just had two induction infusions of rituximab. Fingers crossed.
Sinus. Until my lungs went from clear (2017) to calcified granulomas, micro nodules and extensive ground glass opacities (discovered 2022). You and I had some back and forth on this before … You were stunned that my former rheumatologist stuck with her PMR diagnosis. I am lucky she put me on steroids and I was never able to fully get off. Would have been luckier if she hadn’t decided 6 annual + ANCA tests with rising antibodies didn’t scream for another look. The pulmonologist I saw in 2022 probably saved me. He said it looked like vasculitis and to get a different doctor with more experience.
I remember now, Anyone who says they have sinus problems with a PMR/GCA diagnosis triggers that suspicion for me. And as for ignoring positive ANCAs - she should be reported and sent for retraining. I'm still shaking my head ...
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