Nature of PMR pain?

There is not a lot of experience with Actemra and how it works in PMR - but I can't see how it is significantly different from using pred in PMR in the sense that, if you are on the right dose, enough to manage the symptoms, then there is no inflammation left over in the body to cause raised markers. The raised levels of ESR and CRP are due to the liver producing proteins in response to the inflammation (CRP and it contributes to the change in the rate blood cells settle). That is how you can monitor whether the inflammation is under control in people where they did have raised levels. And as you say - there are up to about 20% of patients whose blood markers never were raised but they had all the symptoms of PMR/GCA which then responded to steroids.

As far as I know, Actemra/tocilizumab interferes in the pathway that produces IL-6, an inflammatory substance that is thought to be at least part of the cause of the inflammation in PMR/GCA. I don't know if that then has an effect on the actual autoimmune disorder - maybe if it is starved long enough it goes into remission. But there have been no real clinical trials using Actemra in PMR, just in GCA. Even the GCA trials don't yet show how long any remission induced lasts - and some people do not manage to get off pred altogether anyway. What I'm saying is that I don't see how the rheumy can be so adamant the pain is no longer PMR.

However - there are several things that are often found alongside PMR which could be causing the pain you have. Bursitis in the shoulder joint CAN be part of the PMR and will usually take some time to resolve - and I suspect that if the dose of pred is reduced quickly it will take even longer. Just a theory.

Anyway - you need some imaging done on that shoulder to see if there is a mechanical or structural problem causing the pain. 

Not a lot of help, however I always wanted to have my blood drawn while I was at my worst, not after large amounts of steroids were helping.  I had so many issues that didn’t fit into PMR initially, then it was all upper body.... forget the walker and crutches.

I also still have flu symptoms.  Fever, sweating,  nausea.  Thought maybe menopause?

Susan, my PMR pain is in the top of legs, my shoulders and hands. The muscles are very stiff and when I try to move extremely painful. I can not walk and if sitting can not stand. I can not put my shirt on or button it. The PMR pain is all muscular. Once I got on enough Prednisone, I was PMR pain free. I have to pay attention to pain, because I am active I get pain from doing more than I should. Try to listen to your body. Good luck on your journey. Stay active, positive and try to smile. ☺️

Susan, low inflammation markers are not indication that PMR is in remission; it only means that PMR is under control. If you were to stop pred ( or Actemra), your PMR would most likely come back. I cannot comment why you have shoulder pain. It could be entirely different reason, and then it could also be that you have reduced medication too far too soon ( so it could be PMR related, especially if it is bilateral pain). You could experiment and take 1-3mg higher dose of pred and see if it impacts the pain. Either way you will have the answer; if pain goes away, most likely it is PMR, if not then, you have different issue.

Keep in mind that symptoms always show before inflammation markers indicate the problem, thus making the symptoms much more sensitive indicator.