Frazzled and Frustrated!

sometimes you're diagnosed just from symptoms..

the two inflammatory markers might be normal when you have PMR..If the Prednisone works for the pain, that's s tell tale diagnosis..and

prednisone messes up all of your bloodwork...see some other rheumatologist...

Hi lynda62707

Stop flipping your lid and listen to your body! What dose of pred are you on now? when i tapered down to 5mg i started to get pain in my shoulders and legs, but my ESR and CPR were normal like yours. I was of the same opinion as you, did i ever have PMR at all!?? because a little while before i had pain i had just gotten over foot op, sinus infection and a cold so i have often wondered if the raised ESR and CRP was left over inflammation from the sinus infection and cold and stress from foot op. Anyway, as you know i continued tapering and came off pred, very slowly though. I still had pain 'everywhere' for some months. It eventually settled down and was left with shoulder bursitis and i was diagnosed with Osteoarthritis which i still have but no more shoulder bursitis after 2 years of cortisone injections. The point i'm trying to make is, you know if it is in your best interest to carry on tapering or go back up a few mg. I wanted off pred asap so carried on tapering. I'm not in any way encouraging you to do that the decision is yours entirely. It may be a good move if you are tested for shoulder bursitis as it is an integral part of PMR. This is done with an ultrasound scan to see if you have a swollen shoulder burser. You have to decide lynda my friend. I recall you saying your rheumy wants you off pred quickly, did she say why?...whatever you decide to do i hope all goes well for you, lets us know of your decision. Meanwhile good wishes and blessings your way...😍😊❤👍

Sometimes you wonder what planet are doctors from. Of course the markers are normal - that is why you take prednisone for. It clears all inflammation. Besides, some 20% of patients dont have inflammation markers up at all.

If I were you I would go by symptoms. You never said where you are with you dose now, but going back to level where you had PMR symptoms under control would be my suggestion. Few mg more will not change your overall steroid consumption, but it would change QOL, and that is what counts.

All my markers (tests done this week) are normal. Rheumy is pleased that I responded so well. But he wants me to continue with 5gm prednisone for 3 months, has recommended a DEXA scan (even though he thought it is unlikely to have osteoporosis with no familial link) and will monitor with blood tests once every two months for 24 months. PMR is long-term management he said.

Lynda, Michdonn is right, you are being too nice. Is there someone who would go with you to your net appointment? Go armed with all the information you have collected from here re markers and the effect of Pred. on them, your classic response to Pred, the need to treat the patient, not the statistics ( that's quite rude but a lesson some doctors still need to learn ). Say that you are not satisfied with the way you are being treated. Find out the procedure for making a complaint. Take a copy of your latest post to let her see exactly how you are feeling.

Hi lynda

Better rheumys head explodes than yours!! I'd say your doing the right thing going back up to where your pain was managed. Stay there for a month then slowly reduce again. If your rheumy has a freak show explain that the pain is unbearable and you can't cope with everyday problems and the pain. The last thing you want is STRESS it will exacerbate your pain and your adrenals can't deal with the stress either. Keep us posted...keep calm if at all possible...sending heartfelt good wishes across the miles....xx