QUESTION OF THE DAY

Posted , 9 users are following.

iS IT possible that PMR has burned out while still on predisone.  I am on 5mg and i have no pain anywhere or stiffness.  Can it be gone (for  Now)  So I have to stay on predisone regardless or can i start  get off them a little faster.  What if it is gone and I really do not need perdisone anymore? Anyone have an answer to this. I have no aches or pains. so confusing.

0 likes, 12 replies

12 Replies

  • Posted

    Try reducing the 5mg VERY very slowly.  I wouldn't want to rush things and upset the apple cart as it may cause a flare which is the last thing you want at this stage.

    5mg is a tiny dose, there should not be any side effects with it and one Rheumy I know keeps his patients at 5mg for a year.  It does seem to work, his patients have fewer flares than those not on the regime.

  • Posted

    Just carry on reducing slowly, your adrenal glands need to get going again too. If you get to zero with no problems the PMR has probably gone into remission. If you reach zero and everything is OK that is fantastic news and you can join the zero club! They say it takes around a year to clear the steroids out of your system after you reach zero.
    • Posted

      ...and another year to feel as though you have your own muscles back in my experience. Everything crossed for you Karen. What a lovely Christmas present.
  • Posted

    It is possible yes, but you can't reduce faster  - because now your adrenal glands have to learn to work again and the slower you reduce the better for them.

    But beware - just because you feel well on pred and you have no pain or stiffness doesn't necessarily mean the underlying cause of the PMR has gone away, it may just mean you are really well managed on the 5mg dose - I feel great and have no pain or stiffness, but last time I looked, PMR was still here! 

    What you do now (and what you really should have been trying all along) is try a small reduction. If a 1/2mg reduction works OK, you can try the next 1/2mg. The only test for "has the PMR gone away" is being able to manage on zero pred with no return of symptoms. So now you reduce slowly but steadily and see how far you get. With a bit of luck it will be zero! But the one thing you DON'T do is rush it!

    • Posted

      I plan on going slowly.  Not counting on anything.  But it would be great.  Hard to imagine since I started this journey in may. But you never know.
    • Posted

      As I say - you honestly cannot tell until you get there. It could well be that the dose you need is only 2 or 3mg - 5mg is a big dose in comparison. 

      There is also some thought that there is a form of PMR that is like reactive arthritis - it happens in response to an acute trigger and also stops very quickly. I'm positive there are at least 3, possibly 4 different versions of PMR.

      Good luck though - hope by next May you no longer need us!!

    • Posted

      I does absolutely seem like there are different versions of PMR, with different manifestations and likely different trigger mechanisms.

      I'm wondering if there might be an expectation of being done with PMR when one is totally comfortable at 5mg because the tablets are so big?

      With 1mg tablets, I can easily home in on where my dosage requirement is and also make small adjustment as needed (usually to address localized, lingering, mostly-asymmetric bursitis in my left shoulder and hip joint).

      I adjusted my dosage from 2mg to 2.5mg the other day, and got significant relief in my left shoulder, so will hold there. I had been treating it like an injury, just trying to avoid doing anything that made it hurt, but that had offered only limited improvement. I had some relief within 12 hours from the added half-mg.

    • Posted

      I posted a LONG time ago about the difference 1/2mg can make! 

      I think some doctors think that anything under 5mg is not doing anything because it is the same sort of amount/less than what the body produces as corticosteroid anyway. It also seems to confuse them because some think that PMR is an adrenal malfunction. If it were, wouldn't you expect patients with adrenal failure to have PMR symptoms? And that doesn't cause inflammation either.

    • Posted

      The hospital pharmacist who saw me before my hip op said on no account to reduce my Pred until I was recovered completely so she must have thought that 1 mg. made a difference.
    • Posted

      Think of the number of people we know on the various forums who have been down to 1 or 2mg, been persuaded to stop and within a few months have been back. I'll only get that far twice. If I get off once and then it reappears - I won't stop taking that 1mg pred for the rest of my life!! 

  • Posted

    what a nice thing to worry about.

    Its a bit like landing a plane. Gently and slowly until the wheels meet the runway at altitude of zero feet.

    Wouldn't dream of approaching the runway from underneath.

    So (almost) all we can do is slowly reduce the pred until either symptoms begin to reappear or we get to zero pred and the plane is landed.

  • Posted

    Oh Karen, I hope that is the case, that would be great for you, but yes slow is the way.   

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