Nature of PMR pain?
Posted , 14 users are following.
I need some clarification. Thanks to Actemra, my inflammation numbers are practically at zero. Thus, according to my rheumatologist, the shoulder pain I have is no longer from PMR, since PMR pain is caused by inflammation. I do have a lot of other things going on in my shoulders which could account for the pain. But, on this site, we've heard from many people diagnosed with PMR who have low inflammation scores. So, it is then possible to still have PMR without inflammation? Also, my pain levels seem to follow the PMR model (mostly in the morning and late evening). Would appreciate any feedback. Thank you.
0 likes, 22 replies
lodgerUK_NE susan29426
Posted
I am assuming it was both, because Actemra is only used for GCA in the UK.
However, I would ask for a scan to see if the PMR has caused a rotator cuff injury, which can and does can come along with PMR.
Now I am no expert but someone will come along who will know more than me. But that is the question I would be asking.
susan29426 lodgerUK_NE
Posted
No, just PMR. I'm in the U.S. I do have rotator cuff injuries on both shoulders, this thread is the first I've heard of it being associated causally with PMR. I'm continuing to taper the prednisone - with the Actemra, I can do 0.5 decrease each month. Just trying to understand how it all fits together. If PMR is caused by inflammation, and I have none now, does that mean I am in remission from PMR? But, then, what about people who have low inflammation markers and apparently have PMR?
lodgerUK_NE susan29426
Posted
Put this in your search engine:
PMR and Rotator Cuff.
You will find a wealth of information.
Unfortunately I do know quite a few people who have had this problem and some of them had surgery.
Anhaga susan29426
Posted
I've had rotator cuff problems since onset of PMR. Exercises given me by a physiotherapist have helped. Also I had some low level light treatment for the first, more serious, injury which probably helped speed the healing. I wasn't aware until recently that this was one of the add-ons which can occur with PMR. I think it may be more to do with the muscle-weakening effects of pred.
Anhaga
Posted
Need to correct what I said. Rotator cuff issues didn't occur until I'd been on pred for well over a year. A flare up of back issues didn't occur until even later, although I've religiously followed my exercise protocol. This is why I blame pred not PMR itself.
Bethune susan29426
Posted
Predisone might also lower your inflammation numbers.
They give Actemra in the US just for PMR , not GCA.
EileenH Bethune
Posted
No Bethune. Actemra is being used for GCA, that is all it is officially approved for as a result of the phase 3 clinical trials, but rheumies seem to be carrying out their own individual patient studies in PMR when they can get funding. It is very expensive so that isn't easy - but I imagine the patients who have no insurance and so qualify for Genentech's programme provide a good source.
Michdonn Bethune
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Bethune EileenH
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EileenH Bethune
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mjhollywood susan29426
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connie28112 susan29426
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My inflammation markers have always been low and it has led to difficulty in diagnosis. My Rheumatologist agrees that it is unusual but not unheard of to have PMR without inflammation blood markers. In addition to the morning stiffness and pain, I have had visible inflammation in/around knee joints without any markers.
Connie
pauline36422 susan29426
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Bethune pauline36422
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ptolemy Bethune
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Anhaga ptolemy
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Interesting how different things seem to work for different people and have no effect on others. Too bad we couldn't run double blind tests with a placebo to check the various things. Not only is there cherry juice, but also aloe vera juice, liquorice, ginger, turmeric (curcumin) .... It's important to note
there are some contraindications for taking some of these, btw.
Probably the best thing we can do is avoid refined cereals and sugar.
pauline36422 Bethune
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