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DSNS and Me

Posted , 7 users are following.

mark9992
mark9992

I could use some advice.  I'm seeing my Rheumatologists Nurse Practitioner Friday AM.

My situation:  I was off pred for 1 month plus in order to get rid of a flare up of Epstein Barr.  That's all gone, and I was started back on Sept 6th at 10MG.  That dose has me feeling pretty good.  So much so that I do more than an hour of walking a day.  However,  I do have some lingering pain in my shoulders. 

They want me on a set schedule where I lower 1 mg every 3 weeks.  I already understand and fully BELIEVE that is nuts, and that DSNS is THE way to go.  However, should I be considering upping slightly first to get rid of the shoulder pain, ...its kind of minor, but its real ...or should I just focus on a DSNS plan to move forward from here when I see her? Advice please!!

0 likes, 8 replies

8 Replies

  • FlipDover_Aust
    FlipDover_Aust mark9992

    Posted

    I'd either stay at 10mg for a bit longer and see if the shoulder pain goes away or do a slight increase. Then stay at whatever that dose is for a few months before you start the DSNS.

  • FlipDover_Aust
    FlipDover_Aust mark9992

    Posted

    Should have said that being on that sort of pred dose is not the worst thing in the world - contrary to what the Drs will have you believe!  
  • tpaggs
    tpaggs mark9992

    Posted

    If you are still experiencing pain, I can't see how tapering will be helpful at this time. I would wait until pain subsides. If pain increases, then I would think of increasing dosage. However, I would be in touch with the doctor so he is aware of what you are doing.

    • mark9992
      mark9992 tpaggs

      Posted

      So far, to reply to what you (tpaggs) and FlipDover have suggested, I'm thinking this at the moment.  First to clarify it seems my shoulder pain has subsided just a bit since I started back.  It could improve still.  That suggests that at least I need to do what FlipDover suggests and hold at 10 until I see what it does.  Then I'll know if I need to increase.  I'm guessing 1 extra mg would do me completely because i'm lucky enough to have no fatigue (ask again tomorrow) and I'm able to exercise, so I have to be close to the optimal dose.  That said,  DSNS is the way, I feel certain of it.

    • Anhaga
      Anhaga mark9992

      Posted

      And if you've only been back for a couple of weeks it seems too soon to be reducing anyway.  The fact you've still got a bit of pain which, however, is improving, shows the pred is working its magic.  I imagine a month at 10 would be a more appropriate length of time you should stay at restarting dose before considering a slow taper.  The taper suggested by your medics doesn't work for PMR as anyone who has ever had PMR is expert enough to know, even if we have little other medical knowledge.  cool

    • Anhaga
      Anhaga

      Posted

      And glad to hear the Epstein-Barre has cleared up.  Must have been a horrible time for you.
    • Anhaga
      Anhaga

      Posted

      Epstein Barr. 
  • lodgerUK_NE
    lodgerUK_NE mark9992

    Posted

    Short answer  - listen to your boyd  - you know how you actually feel.

    Nobody else does.

    If they really want to be helpful, ask for an x-ray on thay shoulder. I would.

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