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PMR Diagnosed after 21 month Tour of Medical Providers

Posted , 8 users are following.

holly28923
holly28923

Thanks to everyone on this site.  I have only had one other post from a couple months ago, while I was waiting for a diagnosis. My old Rheumi was not a nice person and didn't think it was PMR.  He told me to get a second opinion so he would have someone to agree with him.  I did, liked her and switched Rheumis.  With new bloodwork she has confirmed it's PMR.  If PMR typically burns itself out after a couple years, have I served part of this sentence by white knuckling it for 21 months? That would be nice.    

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  • holly28923
    holly28923

    Posted

    My Rheumi asked me for an update.  I told her that my pain was roughly 50% better at 4 days, with a range of 40-70% better.  She now wants me to increase dose to 10mg am and 10 mg pm.  I'm worried about the side effects.  I already feel pretty down and have difficulty sleeping at 15mg.  I still work and give client presentations as part of my job.  The round face is really not good - I had it when they did a trial of prednisone a couple months ago. Does 20 mg a day seem like the right approach? Maybe my inflammation is tougher to knock down since I had it so long.   
    • EileenH
      EileenH holly28923

      Posted

      Personally I'd say she was just being impatient - 50% in 4 days isn't bad and some is more better (lousy grammar but you know what I mean!). If you have bursitis that usually takes longer to fade with oral pred. I'd stick at the 15mg for another few days at least.

      Quite a few people have found that cutting carbs drastically helped them avoid weight gain and no too much hamster-cheeks. It is definitely worth a try.

    • holly28923
      holly28923 EileenH

      Posted

      I definitley do have bursitis in at least one hip and one shoulder.  I think I will go back down to 15mg.  I've been up since 1:30 am.  I also have an area around my mouth that is much more pins and needles sensation than at 15mg.  I hope that doesn't mean I will develop an allergy.  Thanks for the advice.  Much appreciated!    

       

  • Mrs.Mac-Canada
    Mrs.Mac-Canada holly28923

    Posted

    Sorry you're having no success with your local doctors.  Did you take the info on PMR/GCA with you to emerg.? If they ignored that you'd better go to Edmonton to emerg.  Maybe your GP could call and give them some background info ahead of time.

    You said they did a trial with prednisone a couple of months ago. What dose and what was the response? Did they wean you off at that time?  If so why?

    Have you had your Vit D checked. We need to watch that living above the 49th, especially with everyone wearing sunscreen these days.

    15mg to 20mg are the typical starting doses for prednisone. Your response to that is usually a 70% improvement in symptoms within hours to a few days. Since you have only had a 40% improvement have they suggest any further testing?  

    What Eileen said about fighting pred is very true. Despite all it's side affects that do affect us so personally both physically and psychologically we need to be it's friend. At this point it is the only thing we have that gives us any quality of life.  You will find that as you have more understanding of PMR and accept what you can and can't control you can focus on the enjoyable things you can still do.  

    I expect if we only breathed clean air, ate organic everything and didn't touch processed foods it might help but very few of us have that option or choose to do that for a variety of reasons.

    I hope you get the care you need very soon.  Taking your daughter is a great idea.  Keep us posted on your progress.

    Hugs, 

    diana🌸

  • kimberly04963
    kimberly04963 holly28923

    Posted

    I am splitting my prednisone dose as suggested by a member of this forum, and it is working well for me.My pain is now 95% under control. [*smile happy]

    Appointment to see new Rheumatologist on Nov 16th, hopefully this one has a clue.I don't want to hear one more time I'm too young for PMR.Have a great weekend my friends [*wink winking]

    __._,_.___

     

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