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Name that disorder!

Posted , 6 users are following.

gail2910-US-MI
gail2910-US-MI

I will try and be succinct. I am gathering your wisdom and help thinking my situation through before calling my rheumatologist. 

To recap, I originally wrote forum back in May following what I thot was a flare of PMR. At the recommendation of rheumy, I increased Pred. from 2 mg to 12 mg over 2 wks w/o any benefit. (I had been on Pred starting at 10 mg very successfully following initial dx in Nov. 2012) At that point, I asked to be seen in the office.

When I got in to see dr., he dx’ed me with Trochateric bursitis and tendonitis following overuse injury (run through airport). He gave me cortisone shot and five days on Indocin (NSAID) Blood work was normal. My improvement was pretty dramatic.

I have reduced back down to 5 mg. Pred and remain on 15 mg qd of Meloxicam. Pred is for PMR and Melixicam (Mobic) is for the tendonitis. They are not two drugs I want to take at the same time for very long and I do have some GI complaints. My dr. concurs but for now I need both.

So, my sx have worsened in the past two weeks or so. I was at the lake on vacation. The location of pain seems to be sometimes trochanter, always hip flexors, groins, occasionally glutes. I am functionally quite impaired, can't exercise, walk with out peculiar rolling gait, etc. You all know the story.  Sometimes I feel like my legs are full of sand (heavy and “logey”) I attribute this to Pred but it may be PMR.

My goal is to know for sure what we are treating. If it’s a PMR flare, I could up the Pred. If it is not, I’d like to stay at 5 or reduce and treat tendonitis more aggressively. I see three possible action steps. 1) get more blood work done 2) Try Indocin again for 5 days and see if we can knock out inflammation 3) weight bearing hip x ray to see if Osteo arthritis is involved much. I know I have some.  What am I missing? Does this make sense? 

As always, thank you for your help. All thots welcome. Gail

0 likes, 18 replies

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  • FlipDover_Aust
    FlipDover_Aust gail2910-US-MI

    Posted

    My own experience tells me that the pred dose might not be high enough to treat a flare. They tend to need stronger doses than when starting treatment. You could try a very short, but high course of pred and see what happens. If it doesn't improve it's highly unlikely to be the PMR.
    • gail2910-US-MI
      gail2910-US-MI FlipDover_Aust

      Posted

      Thanks, flipdover. I want to try and be systematic about this. When the pain is bad, I want to take handfuls of whatever drug is handy! Just kidding, sort of. This feels so variable, not like my original PMR bout. I am going to pursue some rule outs this week. You may well turn out to be right~
    • lodgerUK_NE
      lodgerUK_NE gail2910-US-MI

      Posted

      Another tack to take, have you had your Vit D levels checked.

      Low Vit D causes aches and pains just like PMR.

      Here in the UK we have all been advised this week, due to lack of Sunshine to take Vit D tablets. 

    • gail2910-US-MI
      gail2910-US-MI lodgerUK_NE

      Posted

      My vitamin D levels were actually OK-- a surprise to all since Michiganis not very sunny either. a good thot though.
  • lodgerUK_NE
    lodgerUK_NE gail2910-US-MI

    Posted

    I would try Bowen Therapy.
    • gail2910-US-MI
      gail2910-US-MI lodgerUK_NE

      Posted

      Thanks, lodger, I would love to try Bowen. I have had no luck locating a therapist where I live but I will keep trying.
    • lodgerUK_NE
      lodgerUK_NE gail2910-US-MI

      Posted

      Agh!!!!!!!!!!!!!!!

      Gail 2910, how about you alter your profile and make it into

      gail2910-USA?  Then I and others will know which country.

    • lodgerUK_NE
      lodgerUK_NE gail2910-US-MI

      Posted

      Hit the wrong key, meant to add,  have you tried the American Academy of Bowen Therapists.   They do have a list of practioners in Michagan, which is what I assume the MI stands for.  I don't know how near you are to any of them. Sorry cannot help more.  sad
    • gail2910-US-MI
      gail2910-US-MI lodgerUK_NE

      Posted

      Feeling stupid but how do I add USA to my profile as you suggested? AND giant thank you, the American Academy of Bowen Therapists has helped me locate a practitioner not too far away. i have left msg. for her and am hoping for call back.

      Access to physician is a real problem. When I am in such pain and disability, I feel hopeful only when I have a tx plan in place--knowing that you are treating the right disorder seems a logical starting place. Feeling disheartened and a bit bitter. Anything that reduces the pain makes me feel hopeful and resourceful again.

    • lodgerUK_NE
      lodgerUK_NE gail2910-US-MI

      Posted

      We all have to learn, so never ever feel stupid on this site, all stupid questions to you may not be stupid to all and you  may just make some sense of it all.

      Now, click on the square next to your name, it takes you to your account, when in click on profile and then use no more than 15 letters in your profile,  I should imagine gail2910 USA-MI  that uses 15 digits including the space.

      Good Luck with changing profile.   With Bowen, if it don't improve with three sessions of one hour per week consecutively then it won't work.  Well that is what the Bowen people in the UK work on.  Hope it works for you as it worked for me and many others. 

  • lucynewas
    lucynewas gail2910-US-MI

    Posted

    Hi Gail

    It sounds remarkably like a sero-negative arthropathy.  Are you on a calcium channel inhibitor (ranitidine, xxxprazole)?  Many of the arthropathies can start with what appears to be PMR.  My grandmother was treated for two episodes of PMR over a period of 10 years before they diagnosed her with sero-negative RA.  I guess I was lucky that 30 years after my first flare up (aged 17) I got my diagnosis of PA. I can now manage my symptoms quite well with 2 DMARDS, reducing steroids, etoricoxib and codeine.  I'm back to working part-time.  I can't usually cope with more than 25 hours a week.

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