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"Sporadic" pain, etc.?

Posted , 9 users are following.

kathy67492
kathy67492

i am taking 7-1/2m of pred daily and have been rebounding off of a flare. I upped the dose to 8m today and don't know whether to go higher, or just take 8m for a few more days. Last couple of days I have had pain, hot flashes and nausea that comes on suddenly after about an hour of activity. It doesn't matter what the activity...cleaning up the dishes, sweeping the porch. It really knocks me down. Then I rest and feel better in about a half hour. Has anyone ever had this experience? Normally I really try to do an "every other day" routine as far as really exerting myself. Thank you for any suggestions.

0 likes, 15 replies

15 Replies

  • Handbrake
    Handbrake kathy67492

    Posted

    Hi Kathy, I think we can all relate to those moments so you are not alone..If these symptoms are different from your usual PMR symptoms it sounds like the start of your adrenal glands being asked to wake up and they don't like the sound of it so as you've upped your dose already give it a few days  and see if settles. At this time I would have a quick nap or sit down when my body asked for it and try to keep moving in between. Even if it's standing up every hour,or climbing and coming down stairs. You will get through this !🤗🤗🤗🤗
    • kathy67492
      kathy67492 Handbrake

      Posted

      I wonder if my adrenals will wake up! I know I have a faulty pituitary, thyroid and adrenals. Appreciate the encouragement because I really didn't know what was happening...it felt so different to have the "streaks" of being down and out. I don't see my rheumy for two more weeks.

      thanks!

    • Handbrake
      Handbrake kathy67492

      Posted

      Hi Kathy, you could try ringing her secretary on Monday and tell her you are having problems and ask if you can arrange to speak to your rheumy on the phone or ask if she can bring your appointment forward.Im sure given your adrenal problems they would want to do something to help you 😜
    • kathy67492
      kathy67492 Handbrake

      Posted

      Good idea...although a little apprehensive because my rheumy said that at my visit he would consider trying something else...?? But at least an adrenal test is in order. Thanks.
  • audrey80537
    audrey80537 kathy67492

    Posted

    Hi Kathy,

    i am experiencing the same symptoms on 12 mg.  I've had PMR for over a year and this is the first time the hot flashes kicked in.  I also have the weakness or tiredness that comes across when doing light activity.  I'm sure at this high dose it has nothing to do with my adrenal glands trying to kick in.

    This has been going on for four days now but prior to that I was under extreme stress.  I guess anything can get it rolling but it is discouraging.  

  • artfingers
    artfingers kathy67492

    Posted

    I'm moving from 7 1/2 to 7 and when at 7 I notice similar issues.  I'm trying to deal with the hot flashes (makes sleep difficult) and also pain, having massage every week that sure is helping.  I'm using the dead slow but I suspect for me too it might be the adrenals trying to wake up.  No major flare yet thank goodnes but I'm taking it easy. Very hard cuz my Mom just died and that is major stress.
    • audrey80537
      audrey80537 artfingers

      Posted

      I truly believe stress brings on these symptoms.  It has with me so far and right before I developed PMR I was under extreme stress.  Some people may be able to handle different degrees of stress better than others because even living in a bubble I believe we can't  get away from it. I need to find some relaxing techniques that I can do daily because although a massage sounds great I'd have to do it twice a day because that's me.
    • kathy67492
      kathy67492 artfingers

      Posted

      So sorry about your Mom!!...huge loss. I think Eileen might jump in here and suggest a little extra pred to deal with this. My best to you...you never expect to lose your Mom I guess, no matter how old she was.

      hang in there!😢

       

    • erika59785
      erika59785 artfingers

      Posted

      Same here ---trying to go down to 7 mg from 7 1/2 is difficult.  I will stay on 7 1/2 for about 2 weeks and give it another try and alternate.

       

    • Handbrake
      Handbrake erika59785

      Posted

      Hi Erica, that's what I did when mine kicked in just sat at that dose until I felt well enough to drop then resumed taper at .5 mg at a time.
  • EileenH
    EileenH kathy67492

    Posted

    Don't blame everything on a possible falre - if this is something that is only really occurring after exercise then you should ask your doctor to do some simple tests. I had similar symptoms that eventually turned out to be due to atrial fibrillation! 

    That said - about 7mg tends to be a point where many people have problems and slowing the reduction right down will probably help - try a couple of weeks with just 1 day of the new dose followed by the old dose for the rest of the week. i would slow the "Dead slow..." approach by repeating each step.

  • FlipDover_Aust
    FlipDover_Aust kathy67492

    Posted

    Remember that not everything is related to PMR and/or pred.... it could be something completely different. So get yourself checked out.

    That said, it could well be that your adrenals are just struggling at this dose.

  • sastew
    sastew kathy67492

    Posted

    Funnily enough, I'm having a really tough day today for similar reasons.  I've been taking 8m one day and 7m the next for some time now.  Decided to drop to 7m and am now on day 5 of 7m.  Feeling wiped out, fuggy and uncomfortable tingling and aching in joints.  Haven't had a flare before so not sure what to expect, but I'm nervous and thinking of switching back to 8/7.  I'm off on holiday next week and this might have been a silly time to make the drop!

     

    • kathy67492
      kathy67492 sastew

      Posted

      I think you should go immediately back to where you were comfortable!

      For me, if I wait too long and don't "catch the flare" it can take me two weeks to re-stabilize back to the original dose. I think Eileen would mostly agree. A holiday, though fun, can be "stressful". Have a good time😊

    • EileenH
      EileenH sastew

      Posted

      Yes - with Kathy on that too! Never try to reduce when you have anything going on - whether it is nice or nasty! You do lots of things you don't normally do on holiday and it makes sense to be comfortable to start with.
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