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Thread: Tapering on predizone

  1. #11
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    Default Re: Tapering on predizone

    Quote Originally Posted by Robertwgriffinsr View Post
    Think I will go with I am just to dam tough for the Rituxan to work!��
    Any tougher and you'd rust

    Glad your Rheumy has the experience and I hope you start feeling better quickly with the upping of the pred. Nice that you got bloods done too! Keep us updated on how you're doing and don't forget to let us know the results you get on Monday.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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  3. #12
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    Default Re: Tapering on predizone

    So Seen doc yesterday and going to stop Rituxan and start daily dose of Cytoxan. Can’t seem to get off the prednisone with out a flare. Anyone else gone this route? Anyone experience side effects from Cytoxan?

  4. #13
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    Default Re: Tapering on predizone

    Quote Originally Posted by Robertwgriffinsr View Post
    So Seen doc yesterday and going to stop Rituxan and start daily dose of Cytoxan. Can’t seem to get off the prednisone with out a flare. Anyone else gone this route? Anyone experience side effects from Cytoxan?
    I didn’t have any side effects from cytoxan. I took it for about 16 months after disease onset. My dose was 100-150 mg daily by mouth.

    When taking cytoxan, be sure to stay well hydrated. Urinate whenever you have the urge. Cytoxan’s metabolites are hard on the bladder. A longer-term side effect can be bladder cancer. It’s 5+ years since my last dose, and I have no issues so far (knocking on wood).
    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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    Default Re: Tapering on predizone

    Thanks Pete! That is encouraging news!

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    Default Re: Tapering on predizone

    I had numerous bladder infections while taking it but scoping of my bladder indicates no signs of cancer seven years later. It can be hard on the bladder though so drinking and voiding often cannot be over done.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Tapering on predizone

    Thanks for sharing your experince. From what I am picking up the biggest danger is from a suppressed immune system. Same on both medications. Rituxan just wasn't getting the job done. When ever I went below 15 ml on prednisone I would have a flare. Anybody have hair loss?

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    Default Re: Tapering on predizone

    You can combat hair loss with folic acid. Ask your doc about it. I took 1 mg of it daily when I was on methotrexate. I didn’t lose hair, but was coarser. Back to normal now that my only maintenance drug is an annual dose of rituximab.
    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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  10. #18
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    Default Re: Tapering on predizone

    Thanks Pete. I will look into the folic acid if it comes down to that.

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    Default Re: Tapering on predizone

    Quote Originally Posted by Robertwgriffinsr View Post
    HI, my name is Bob and I was diagnosed with Wegeners in January 2017. Immediately was put on 80 ml of predizone and 2 weeks later had my 1st IV of Rituxan. The predizone helped right away some but it took a few months before I really started feeling better. Started tapering of the predizone and by July I was down to 10 ml and I had a flare. My Rheumatoligst was out of the country for a month so my GP doctor bumped me back to 40 ml until the Rheumatoligst came back. Symptoms improved almost immediately but now I was back to tapering down from 40 ml again. Also I received 2 more IV of Rituxan after my doctor returned. Know I am down to 8 ml a day and ever since I went below 20 I have been experiencing some pretty strong withdrawal symptoms. The withdrawal symptoms I can live with but the are so close to the same as the flair I am constantly wondering is it the drugs or the disease. Have bloodwork scheduled for the end of the month and should have answers then. My question is has any one else experinced bad withdrawals from the predizone? After some research I have found some people have had these but not from someone that had Wegener's.
    Hi Bob I had a pretty hard time getting off the pred. Once I got below 20 every time I reduced, and I was only reducing by 1mg, I got headache, like a migraine headache that lasted a couple of days, sinus pain and pressure and felt really tired. It was very similar to a flare and I was also wondering if it was a flare or the steroids but every time my bloods were OK and after a week or so the symptoms disappeared until next time I reduced it. I reduced by 1mg every month once I got to 15mg but I still got these symptoms. It is worth preserving just keep thinking soon you will be off it the end is in sight. Good luck.

    Donna

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    Default Re: Tapering on predizone

    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.

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