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Avascular Necrosis

Posted , 6 users are following.

gail2910-US-MI
gail2910-US-MI

My unresolved hip pain which was alternately attributed to PMR and tendonitis has been clarified following two MRIs. I have AVN in both hip joints, one collapsed femoral head and osteo arthritis. This may or may not be caused by Prednisone. The three predisposing risk factors are excessive alcohol use (not me), long term use of steroids (i'm going on 2 years although never over 10 mg and very gradual reduction) and of course, "idiopathic."

I am facing two hip replacements in the near future and am pretty heartsick although looking forward to a reduction in the debilitating pain and hopefully a good outcome and the ability to resume activities I enjoy.

So part of my message is the reminder (which I know you all know) that Pred is not a benign drug at all and can create a cascade of serious problems.

But here's my current hitch. i have been at 5 mg since May and the surgeons don't like to operate with Pred on board as it creates greater risk for infection etc. I reduced to 4.5 two days ago. My hip joints are the big deal at the moment-- I don't know if some pain is PMR or not.

I see rheumy tomorrow.

HOW do we assess stability/activity of PMR?

Do you continue Pred with dx of AVN if that is causing it?

HOW do you treat both conditions?

Is there any thing at all I can do to speed up reduction of Pred OR the activation of Adrenals?

What are the tests that the rheumy should be looking at?

I am worried I will go through these two surgeries and still have pain and disability and no way to treat it. Thank you for your thoughts and encouragement. I have followed what I believed to be pretty sound medical protocols and am feeling pretty heart broken.

 

0 likes, 10 replies

10 Replies

  • EileenH
    EileenH gail2910-US-MI

    Posted

    Shop around for surgeons would be my advice. There are 2 ladies who used to be on the forum who had hip replacements done while still on pred. One was stable at 10mg - the surgeon who finally did it (she'd had one who refused like yours) was more interested in her being stable and not at risk of collapse during surgery - which remains a risk for some time even after stopping pred. The other was probably at a slightly lower dose but also probably above 5mg. What I do know for certain was that they were able to reduce the dose steadily post op and get off pred altogether - it was almost as if the hip pain had been making the PMR worse. The other part was also that they needed to be mobile to do the rehab post op - and most people with active PMR wouldn't be without enough pred.

    It is difficult to tell if it IS pred isn't it since idiopathic is an option. Is pred all you have been on? 

    However - assessing activity of PMR is done by reducing the dose - if it flares up in response to a lower dose - it's active. Reduce too fast then you have steroid withdrawal pain which is so similar to PMR you wouldn't be entirely sure which was which. Other than their "steroid sparers" I know of no way to reduce pred dose faster - and they can take some time to work (if they work at all which isn't certain) and adds in another layer of side effects.

    Bit of a rock and hard place situation isn't it.

     

    • gail2910-US-MI
      gail2910-US-MI EileenH

      Posted

      I was only on Prednisone.  I did drop to 4.5 mg on friday and wil ride with that for a while. My surgeon didn't refuse to operate; he said obviously he's done it many times, but that being on Pred increases risk of infection etc.Suggested even if I could back to 2.5 (last place I was stable before my hip issues), it would be better. Now with the hip pain, bone on bone, it's hard to say if PMR is present or not. I suppose if my arms got involved again....... they've been fine for over a year. and yes, it is a rock and a hard place. thanks for your thots.
  • lodgerUK_NE
    lodgerUK_NE gail2910-US-MI

    Posted

    Gail

    There is a embyro group of people in the USA emailing each other and hoping to set up a website and make more contacts in the States.  Most of them use this forum and another one.

    If interested, send me a PM with your email address and I will put you in touch.

    • lodgerUK_NE
      lodgerUK_NE

      Posted

      Rec'd your PM and it has been dealt with.

      Keep in touch.

  • Anhaga
    Anhaga gail2910-US-MI

    Posted

    I guess my post was deleted because I tried to give full information so you could actually follow up if you were interested. Did you see it before it was deleted, Gail?
    • EileenH
      EileenH Anhaga

      Posted

      Links and anything resembling advertising is not allowed - but you can send it by private messaging.
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