When initially dx'ed with PMR, my sed rate was 58. It has been in normal range while on Pred. I am trying to sort out whether my pain now is caused by PMR or tendinitis. Sed rate was 14 and rheumy is concluding it is soft tissue then and ordering MRI of hip and pelvis. I will obviously do this but sometimes it feels so much like PMR (the tightening down in upper hip flexors when trying to walk), that I question his conclusion. I know I"ve read on here about people having it w/o elevated levels but don't recall any specifics. It's not that I want it to be PMR exactly but having PMR PLUS tendinitis of hip flexors/groins is a hard cure so I am trying to be sure. I have also located a Bowen therapist thanks to your suggestion lodger to look in the national directory! Sadly, she was married Saturday and is on her honey moon, but soon I will give that a try as well!!
Tendonitis and synovitis can be part of PMR and even being on pred doesn't guarantee being pain-free because the blood supply to the joints and tendons is relatively poor - that's why sometimes local cortisone injections are better because they get to where it is needed.
Your blood levels SHOULD be normal or thereabouts while on pred - there should be next to no inflammation. In fact - I don't know whether tendonitis would cause elevated blood markers, I don't think it would.
Gail,
i wondered about MRI too, but since we have to pay 10% of it on my insurance, I'm not doing that again. Did one in fall for my lower back, showed nothing! $500!
my pain is still in my hip flexors, especially right, I must lift my leg with my hands to get in car and hurts to lift when in sitting position, I think inflammation causing empingement. Also my left groin and my butt bone bursa's and shoulder rotator areas empingement in internal rotation. Now shoulder blade area...all that said, I agree with you, I don't think these doctors understand PMR that much compared to experienced people here.
she just put me on Hydrocychloroquine to see if it helps...but I'd almost rather have pain than another drug, but I'll try it.
someone reminded me...they call it a doctors "practice" for a reason.
I have Bowen set up in two weeks!
it was nice to hear what Eileen said.
Oh, and a few months ago my SED rate was 7, recently I she said 16. My shoulder blade aches are new. My starting PMR SED was 80.
im on 7.5 Pred. Will stay for a while.
Your sx are similar to mine, Layne. The lifting of the legs, omg....hate that. I had all of this initially with PMR but the trochanter pain and the bursitis seemed to be the result of injury and so is (sort of) being treated separately. As I am not improving, I find myself wondering if it IS in fact tendinitis OR whether it is a flare in PMR. Dr. believes that normal sed rate makes it more likely it is tendinitis. (from injury in April) but to me that should be healing by now with as much rest as one can give hips and pelvis and Meloxicam at 15 mg qd. So the MRI is intended to clarify that. I am not trying to "oversimplify" this but it seems reasonable to know what you are treating. As it is, Dr. has me on two different meds which are contraindicated. Which he admits is not ideal. I am not feeling very trusting-- the approach to tx seems rather slapdash to me.
Oh! And YES I had right hip Trocanteric bursitis too! Had it year before, PT made it go away, then when got PMR it came back, but could be because I climbed a BUNCH of stairs and when I do stairs it sort of comes back.
I did get cortisone shot in that hip. Helped a little, but mostly my Physical therapist strengthening my glutes and taught me how to engage my glutes when doing things has been a LIFE saver, or trocanteric hip saver I should say!!!!!
if this helps... When bending down, keep knees right angles, lead with your butt, not let knees bend over toes, and most important press knees outward, and drive feet into floor and outward then squeeze butt when retuning to upright position. And they taught me how to align my back. Pelvic tilt and ribcage down.
Yes, if there are any heroes in the treatment of this malady, MY vote goes to the PTs who help us keep at least some of the wheels on the bus.
I know very few UK patients who get physio - which I think is appalling personally - but I don't have physio and have managed well using Bowen...
Very excited to have located a Bowen person close by! Unfortunately, she is on her honeymoon, but I'm next in line!