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Thread: Lowering pred early?

  1. #1
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    Default Lowering pred early?

    Hello!
    Do we have new smilies?

    I'm currently on 10mg of pred at the moment, the dose goes down every 3 months by 2.5mg so next week it will go down to 7.5mg. I wondered if you guys thought it would be ok to lower the dose a week earlier? (so 11 weeks instead of 12 weeks).

    My reason for this is pure vanity as I'm going to a wedding and wanted what remains of my moon face to be completely gone by then I feel silly bothering my doctor to ask him this because it's not important...and I'm not sure what he'd say- he's new because my other doctor has left and I neither think he's familiar with Wegeners or the treatment- he asked me what meds I'm on the one time I saw him.

    The schedule is reducing the preds every 3 months only because of the trial protocal - I'm on a cyclophosamide vs. another med trial.

    Thanks x

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    Talk with your doctor. Lowering is two early might cause you to flare or you might have other symptoms....it takes a while for the moon face to go down.

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    I agree with Elephant. Note also that even though you lower your dose it may not guarantee that your moon face goes away in time. It might go away at a lower dose or after you're off it altogether. Sorry about being a wet blanket!
    Forum Administrator
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    From 10mg to 7.5mg is quite a jump so I would give it as long as possible. After 7.5mg I think that dropping by 2.5mg is far too big a step because you are entering the territory where you can expect problems. You really need to drop as slowly as possible to give yourself the best chance. If it does not go well, you will have to increase the dose and go through it all again.

    Are you still taking Cyclophosphamide? How long have you been on it? It is quite unusual to still be on ctx when your Pred dose is so low.
    Jack

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    Ditto to that. I'm going through the second "Go all the way back up on the pred" messes in as many months. It's miserable when it happens.

    I'm surprised at how many regular rheumys don't know how to taper pred slowly enough. They work with it all the time!

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    Ok thanks guys I will be sensible!

    Jack I had 6 doses of IV cyclo, that was it. That finished a few weeks ago now.
    I'm taking part in the trial for 2 years...i guess it will measure long term what drug had the better outcome.

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    Another thought... lowering or altering any of your meds without doctor approval could skew the trial study you are participating in... possibly effecting the treatment a lot of people get in the future.

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