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Thread: Tapering on predizone

  1. #21
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    Default Re: Tapering on predizone

    Quote Originally Posted by Robertwgriffinsr View Post
    Thank you Donna for sharing your experinice with me. Doctor just switched me from Ritaxium to Cytoxan. Apparently the Ritaxium wasn't working. Been pretty sick the last few days with stomach problems and head aches. I think it's the Cytoxan. On 100 ml a day. Hopefully it's just temporary.
    Sorry to hear that I hope you improve. I felt quite sick on Cytoxan tablets but they switched me to infusions which I had once every two to three weeks and I didn't feel sick at all on these. Maybe you could ask about the infusion if you continue to feel sick. You have to go to hospital but only as an out patient and it takes about 3 hours for the infusion.

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    Default Re: Tapering on predizone

    Ok want to throw this out there and see if anyone else has had a similar experince. Started of A year ago with 4 IVs of rutixan. 80 ml prednisone. Tapering down on Prednisone but when ever I got below 15 ml I would have symptoms of a flare up and then have to go back to 40 ml and start over. Did this 3 times in the last year even though I was receiveing IVs every 4 to 5 months. Now the doctor has switched me over to Cytoxan 100 ml a day and I am down to 12.5 on the prednisone. WBCs are down some but still in the normal range 9.5. Doctor would like to see this number lower and may have to increase dosage. Anyone else have such a problem trying to get of prednisone?

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    Default Re: Tapering on predizone

    In my experience. The longer your on prednisone the longer it takes to taper off. It’s hard to recognise if the symptoms are associated with prednisone withdrawal and the WGs disease process. At one point it took me over a tear to taper off prednisone & its terrible.


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    Default Re: Tapering on predizone

    Thank you for responding Natrice. That's where I am at now. Been a year now of being on predizone. Up and down and back up and back down! Inflammation markets are all up when having a flare and go back down after prednisone is increased. Wait and see what happens.

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    Default Re: Tapering on predizone

    Many Weggies find they need to remain on a maintenance dosage of pred very long term. The dosage may very but they often end up in the 5-10 mg range and may experience flares while trying to taper down so the goal then is to try get to the lowest maintenance dosage you and and your treating team think is best for you. My doctors have said pred is bad but GPA flares are worse so it can be a balancing act to try find the best numbers for each person. They also remind me that many people besides us Weggies take pred in a maintenance dosage of 5-10 mg for many other health issues without having serious problems from the pred at those lower dosages.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Tapering on predizone

    Thank you for sharing. Think I read once 7.5 ml. or less should not be to harmful.

  9. #27
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    Default Re: Tapering on predizone

    Hi everyone,

    I'm off prednisone since last week.
    I can't tell if my roving arthritis is a flare up or prednisone withdrawal.

    When I was down to 3mg/day I was doing just fine, but from 2mg/day down to none (in one month) I have been experiencing much more fatigue than usual and lots of mild to medium arthritic pains to the point that's gotten very hard for me to walk.

    Does anyone know how long does prednisone withdrawal supposed to last? (I started at 60mg/day since 9/2017).

    Thanks.

    Ed.

  10. #28
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    Default Re: Tapering on predizone

    Quote Originally Posted by seied View Post
    Hi everyone,

    I'm off prednisone since last week.
    I can't tell if my roving arthritis is a flare up or prednisone withdrawal.

    When I was down to 3mg/day I was doing just fine, but from 2mg/day down to none (in one month) I have been experiencing much more fatigue than usual and lots of mild to medium arthritic pains to the point that's gotten very hard for me to walk.

    Does anyone know how long does prednisone withdrawal supposed to last? (I started at 60mg/day since 9/2017).

    Thanks.

    Ed.
    I dont know how long pred withdrawal supposed to last. I was never strong enough to continue to taper it down once I got symptoms. I am stuck on 5mg for life.
    I guess what you feel is a reaction to the lack of pred. My advice is to go back to the dose where you didnt have symptoms and stay there for a while. I wonder what others think ?
    Anyway, please call your dr. and ask him about it.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
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    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
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  11. #29
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    Default Re: Tapering on predizone

    Quote Originally Posted by seied View Post
    Hi everyone,

    I'm off prednisone since last week.
    I can't tell if my roving arthritis is a flare up or prednisone withdrawal.

    When I was down to 3mg/day I was doing just fine, but from 2mg/day down to none (in one month) I have been experiencing much more fatigue than usual and lots of mild to medium arthritic pains to the point that's gotten very hard for me to walk.

    Does anyone know how long does prednisone withdrawal supposed to last? (I started at 60mg/day since 9/2017).

    Thanks.

    Ed.
    I am currently tapering off prednisone myself. I have a terrible time-my body really likes it. I’m going down 1 mg a month.


    Sent from my iPhone using Tapatalk

  12. #30
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    Default Re: Tapering on predizone

    I’m almost off the stuff. I’ve been tapering at -0.5 mg/month since last October. I have another month to go. So far, so good. June 22 (or if I run out of pills sooner) will be my first pred free day since 2013.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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