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Should I increase prednisone?

Posted , 4 users are following.

tj52700
tj52700

My mom was diagnosed with pmr last year and it has been a complete disaster. She was in perfect health previous to diagnosis but has since had a perforated bowel, 6 compression fractures, skin tears galore, numbness, pain, .. you name it! Anyway, her doctor started her on 60mg of prednisone. She has tapered, increased, tapered, numerous times. Right now, she is on 35mg. Her recent sed rate was 77 and her doctor thinks she should increase to 60mg for a month. Does this seem too high for too long?

0 likes, 5 replies

5 Replies

  • alward
    alward tj52700

    Posted

    Wow! Your mom's story sounds exactly like my dad's. Perfect health until a year ago. Was diagnosed with R and GCA, put on 60 mg. Yo-yoing for a year because of flares and eye issues at lower doses. They continuously drop and increase by 10 and I think that's too much...so convinced him to do it by 5 to see if it's better. He's at 25 mg still. In the last year, he's blown up like balloon, skin issues, breathing problems and now severe disc degeneration in his back. He can barely get around now. His rheumatologist is useless and he lives in a rural area where this specialty is pretty scarce. It's been such a horrible year for him.

    • tj52700
      tj52700 alward

      Posted

      Sounds really familiar. We live in a rural area also and am no where near convinced that her doctor knows how to treat her. I think her raised sed rate has nothing to do with her PMR because she has no pain. He thinks she has GCA because she told him her eye sight isn't as good as it used to be. She's 84 and has no symptoms of GCA. So then I woner if he raised it so high because he thinks that's what she has. I don't think I've ever been this frustrated in my life!

    • Anhaga
      Anhaga tj52700

      Posted

      I believe that GCA can present with few or no symptoms.  Silent GCA. Depending what her visual symptoms are, it could be a very good thing the doctor is aware of the possibility of GCA.  A biopsy before starting pred would have been a good idea although even that is sometimes inconclusive.  I think in larger centres they are starting to use MRI or something to help with diagnosis.  I agree the uncertainty surrounding GCA and PMR is very frustrating.  Once on prednisone the key is to stay on it long enough to deal with the inflammation and then when tapering not to go too quickly or in too large steps, as alward suggests.  The yoyoing up and down is not helpful.  On this forum there are lots of posts discussing the various ways people deal with side effects.  I hope your mother is soon on the mend.
  • Sheilamac_Fife
    Sheilamac_Fife tj52700

    Posted

    I would not be happy to increase Prednisolone based on an ESR result. A raised ESR can be caused by many other things. Most docs do not use this test for PMR any more. What is her CRP test result? However, symptoms are king!

    If she does not have GCA this is a very high dose. And the yo yo-ing is not good, makes it harder to taper sucessfully, apparently. You say she does not have pain, I'd be wanting to decrease by 10% and see how she copes.

    Hope she feels better soon. Let us know

    • tj52700
      tj52700 Sheilamac_Fife

      Posted

      She has not had a CRP test recently, to my knowledge. The biggest problem she is facing right now is that her doctor is out with a knee replacement and his replacement tends to jump to conclusions way too quickly. We are either going to switch to a new doctor or wait until the original returns. She hasn't upped her prednisone, and I told her that I'm fine with that. She is in absolutely no pain, and that's always good!

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