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Nature of PMR pain?

Posted , 14 users are following.

susan29426
susan29426

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.

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  • lodgerUK_NE
    lodgerUK_NE susan29426

    Posted

    Just a not of clarification please, were you diagnosed with both PMR and GCA or just PMR?

    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
      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
      lodgerUK_NE susan29426

      Posted

      Susan

       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
      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
      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
    Bethune susan29426

    Posted

    I’ve had classic PMR symptoms for 8 years.  Sometimes my labs are up. Sometimes down... mostly down.  However, it is very  hard for me to get below 10 mg prednisone , though I’ve been symptom free at 5mg. for months at a time, but then flares occur.

     Predisone might also lower your inflammation numbers.

    They give Actemra in the US just for PMR , not GCA.

    • EileenH
      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
      Michdonn Bethune

      Posted

      Bethune, I know this sounds crazy, but have you ever tried to eliminate food from your diet that may be causing inflammation. I believe our diets have a great effect on our well being. Thinking positive, being active with a smile. ☺️
    • Bethune
      Bethune EileenH

      Posted

      My experience s that in  the U S , Actemra is commonly prescribed for PMR  without GCA.  Perhaps it is off label,   But it is not unusual.
    • EileenH
      EileenH Bethune

      Posted

      It certainly is off-label. However, your experience is very different from mine. Although on the forums we do have a few patients on Actemra for PMR it is not used anything like as much as for GCA.
  • mjhollywood
    mjhollywood susan29426

    Posted

    Hi.   Same.  For me!!! my labs are great. Been on actamara for 7 months.   And yes I still have stiffness in the upper thigh area (both). I have only been effected by p m r in the thigh.. in the morning and at night !!!   Now the rummy is telling me I may have a patch nerve !!!! I don’t.   Most of theses docs don’t understand p m r.  I am down to 1 mg predsone   

  • connie28112
    connie28112 susan29426

    Posted

    Hi Susan

    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
    pauline36422 susan29426

    Posted

    interesting blogg.   i am down to 2 mg.   still with bilateral pain in shoulders,  so i am thinking is it pmr. or not. so rather than risk it i have , made an appointment for bloods  doing   if they are ok   then i will start to reduce  again.   but  i have been on  cherry juice  for 4 weeks   now and i think  its begining to work, they recon it takes around 5 weeks to kick in.    but i will report back on this  in a couple of weeks
    • Bethune
      Bethune pauline36422

      Posted

      Cherry juice?  Can you write more info about that please?
    • ptolemy
      ptolemy Bethune

      Posted

      Hi Bethune, I take cherry juice too. Apparently it is important it is the juice of the sour cherry ideally Montmorency cherries. I love cherry juice anyway. It is not that cheap though.
    • Anhaga
      Anhaga ptolemy

      Posted

      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.

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