GM Everyone! I’ve been a member here for a few years, and I’ve had PMR. At one time I was on 90 mgs of prednisone. My CRP was 82! It took me 2 yrs to wean down and in the meantime, I was also diagnosed with NHL. My rheumatologist felt that the cancer was elevating the inflammation in my body. So I treated for the NHL for 5 yrs, the first 2 yrs, I was also on prednisone. (If I can remember correctly). I’ve been off treatment for the cancer for over a year. (I treated with chemo and Rituxan).
Lately, my hip has been acting up. I am in tremendous pain and can barely walk at times. I’m trying to recall the symptoms of the PMR, but nothing specific comes to mind, other than the fact that I felt better being on the prednisone. I am trying to determine what doctor to see for this hip pain. I only see my rheumatologist once a year now, and won’t see her again until Sept 2023.
Can someone remind me again about the symptoms of PMR so I can determine whether I should see my rheumy or see a pain doctor? TY.
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nymima01
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left-sided neck and shoulder pain. Right-sided buttock and hip pain. I have osteoarthritis in my left knee from being bone on bone. But the pain from my knee is nothing compared to the pain in my hip! I even forgot about my knee pain…..
Having suffered from both for a long time, OA for more than 35 years, I have been reconsidering this. Back in the first decade of this century I remember actions which caused me pain, and which I blamed completely on OA. In the last couple of years I've blamed certain other things on OA, even as I tapered pred, and which yet cleared up if PMR definitely flared and I increased pred. However, today, and this has been true for several months, not only is PMR under excellent control, I also seem to have only OA twinges, very much as was true when first diagnosed when I was about 40. In other words, one knee might bother me when I walk. Or I might feel pain in a heel, or my neck might bother me. But not at all in the same way as they did when I definitely still had active PMR (and was probably undertreating as I blamed increasing pain on OA). I distinctly remember one occasion very clearly. I was on holiday in Egypt (dream come true) and on the Nile vessel there was an evening of entertainment when the audience was collectively pulled to its feet and had to take part in a dance which involved some swooping and graceful movements. I tried not to, but was dragged in by one of the performers, and I still remember how painful it was. OA I believed. About eight years later I was diagnosed with PMR. I no longer have this profound difficulty moving, although I am considerably older (75) and it's been perhaps 16 years since this event. My pred dose is vanishingly small.
When I had my bad flare last year I blamed the increasing pain on my arthritic neck, and I had unilateral pain in a shoulder. It was only when I remembered how I used to go to bed with a scarf around my neck when I had undiagnosed PMR in an effort to comfort myself because of the pain, and was considering doing this again, I decided to try increasing pred a significant amount (took 10 which is high for me). Miraculous recovery. My shoulder still bothered me for some time, but gradually eased, and I do exercises prescribed by my physiotherapist, so it was not "only PMR, " but it wasn't "only OA" either. Right now, and for a few months, I've had neither neck/shoulder pain, nor standard PMR symptoms, and my pred has successfully tapered back down again.
I should add that before diagnosis with PMR I had a painful hip, so much so I thought I should get myself onto the waiting list for a hip replacement. Only one hip. X-ray showed no sign of OA, about the only joint that I've had x-rayed which is clear of OA. It cleared up with pred, although returned, somewhat sporadically over the years, as I tapered. I've since discovered an exercise which has made the pain go away altogether. Once again, not only either OA (which I don't have in that joint) or PMR, as targeted exercise helped, but so did pred.
Given your health history you must see the doctor. Keep a record of your current symptoms, note how they may change from day to day. And it will be interesting to find out if a suitable dose of pred works its miracle! Good luck. 🍀
TY HeronNS! That does sound like me! Not sure what to think, but I do know that there is no pain medication that helps me at this point. I don’t take opioids and hope never to have to take them, but I have other meds that help me with my osteoarthritis. I use lidocaine 5% on my knee, mobic, diclofenic and OTC pain meds. They all work well for the OA. But they don’t touch the newer pains I’m experiencing now with my neck, shoulder and hip. It’s just an assumption now, but what’s weird is that I’ve been trying to decide what doctor to call with the symptoms I’m having, and this morning on my phone was a message asking me if I know what PMR is? I forget in what context it appeared on my phone, but it helped me enough to narrow down my options of which doctor to call first! So now I wait for a few days and try to rest in between.
Having learned not long after my doctor told me I had OA that aspirin (and eventually all the nsaids) interfere with cartilage renewal, I've avoided taking any pain medication for the OA, A couple of years ago I learned about Flexiseq and have been using that on my knees which I had hurt, and which both have OA. It's a non-medicated gel which works as well as anything with a painkiller in it! In North America we appear to have no choice but to order it through Amazon, but I've found it's worth it.
HeronNS what is that hip exercise please, or if you have a series are you able to share video? I have to get this "sciatica" thing (or whatever it is) under control. Thanks.
If you google clamshell for bursitis alberta you'll come to the version I found. After I used it and experienced rapid relief I did a bit more reading and in fact there are cautionary tales about this exercise and I might not have used it if I'd read those first. So if you try it and you don't feel better in a few days, or if you feel worse, then it isn't right for you. There are other exercises on that site which I didn't try as I didn't need anything else, but others might find useful. Good luck!
hi piglette - I am seeing my rheumy soon. I don’t know what she will need to see. Last time I didn’t require an x-ray for my neck and shoulder pain, so I’m not sure if I will need to get an x-ray of my neck and shoulder this time, and also my hip. This rheumy is not the same doctor I had a few years ago when I was first diagnosed with PMR. My CRP was at 82 at that time, so maybe my rheumy back then (about 5 yrs ago), felt I didn’t need an X-ray for diagnosis back then. I saw my new rheumy about 4 months ago and my CRP and the ESR was normal at that time. I did complain to the new rheumy that my shoulder was bothering me again, but she dismissed it because my blood work was good. But my shoulder and neck have gotten worse and now I can hardly walk due to hip pain. No medication helps with the pain. NOTHING.
I can’t say that I have groin pain. The pain is emanating from my right buttock to my hip. My daughter has Ankolosing Spondylitis RA, and she had terrible groin pain before she was diagnosed. She takes Humira now and the problem is resolved. Good thing that works for her because she can’t take prednisone! She gets rages and depression from it. I did well on prednisone last time - even though it was such a high dose.
It will be interesting to see what is going on. All meds that I have for the osteoarthritis, (diclofenic, mobic, 5% lidocaine), don’t work on this pain. No OTC meds that work on my osteoarthritis of my knee, don’t work on the neck or hip pain. Not even a little bit. I’m hoping it’s not PMR again, because this may just be a forewarning that my cancer is acting up again.
Doesn't that depend on whether nerves are being impacted? I was able to self-diagnose bursitis as opposed to sciatica because it was outer part of hip, like nymima01 describes. PMR caused, quite literally, "pain all over" so I never distinguished groin pain from any other pain I was experiencing at the time.
Piglette. The pains started in the groin and then wrapped around to low back, hip and down outside of knee and calf. I do have an x-ray booked for next week and a CTscan at some point. This is very debilitating in addition the PMR/GCA and TMJ which is also going on at this time. I know your reply is in response to nymima01 but it caught my eye. I sleep only for 3 hrs or so and then the pain awakens me. Feeling sleep deprived right now and also Rheumy has me weaning from 60 mg pred already (after 2 weeks), as no definitive sign of GCA in the biopsy. So I settled at 55 and not her recommended 50, but feel miserable.
My PMR can flare in one shoulder or another or go back and forth. Doesn’t necessarily hit both at the same. PMR was diagnosed after my right shoulder began to hurt and ibuprofen had no effect, then two weeks later, could not raise my right leg and blood test showed sed rate of 128%. After 40 mgs pred, pain gone the next day. But right arm is symptomatic now on 20 mgs methylprednisolone. Argh.
My problems started with my hip. No pain as long as I didn't move, but excruciating when I did. MRI showed no OA, 'just' inflammation and effusion. I couldn't raise my leg from a prone position- not because of the pain but it just wouldn't move. Paracetamol made no difference and I can't take NSAIDS. Physio didn't help. A few months later and it spread to my knees, back and other hip, then my neck and jaw. Eventually I was diagnosed with PMR and GCA. ESR and CRP were in the 80s.I think the crucial thing is to get OA ruled out and get a blood test.
I currently have sciatica on one side & trochanteric bursitis on the other side…even if pain is bilateral it’s not necessarily PMR, & not necessarily same problem on both sides! I had a hip x-Ray last week & it’s abnormal. I have OA & suspected RA, too,
If this is PMR, I am recalling what my situation was when I was first diagnosed with PMR. I don’t remember if PMR came first, or if my blood cancer arrived first. But I DO REMEMBER that I was very stressed 7 yrs ago when I was diagnosed with both conditions. I was contending with caretaking my mother for 10 yrs, and at the same time dealing with my immediate family all dying of one thing or another during those 10 yrs. I took care of them too! I lost my dad, and my 2 beautiful sisters too early, and then my mother needed care and with no one else to turn to, we took her in. So much stress and sadness. Now - 7 yrs later, after treatment for the blood cancer, and PMR, I’m having familiar symptoms again due to another stressful situation that rears its ugly head every once in a while. My daughter, who is an alcoholic, had a relapse and had to go to rehab again. This means that I take over care of her household and my beautiful grandson until she comes home. This is very stressful and one that I don’t know how to stay calm about, even though she is home and is doing okay now. This just happened about 2 months ago. And now here is this condition presenting itself again. Just thinking about stress and the possible scenarios that come about from stress.
After 2 years on prednisone for PMR I recently developed severe hip pain. I increased my prednisone thinking it was PMR pain but it did not help. The pain got worse even opioid pain pills barely helped for a couple of hours. My routine 3 month check up with my rheumatologist was after 2 weeks of limping and barely functioning. He did not think it was PMR and diagnosed bursitis. He injected my hip with steroid and the pain is down from 9 level to a 4 after 2 days. Something to consider. I never knew bursitis could be be so debilitating. I hope you get answers soon.
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