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Thread: Lowest dose of Rituxan for Wegener's ?

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    Default Lowest dose of Rituxan for Wegener's ?

    As the use of Rituxan is going on for several years now has anyone here used a low dose of Rituxan? I see 200mg as a possible dose in RA studies. Anyone here had a dose that low and at what frequency?

    As time goes on infection becomes an increasing risk and I don't know if the bottom effective dose of Rituxan has been found yet.

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    I'm at 500 every six months. I don't know that lower with more frequency would be optimal for GPA. Are there any GPA studies ongoing that you are aware of?

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    I am at 1000 mg every six months. When I am running late on an infusion I really feel it. Now I have the prednisone down to 8 1/2 daily. Will be happy to get to 5. None would be best.

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    I'm at zero pred between infusions until I get close then I use it as a bridge.

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    I've read of 200 mg being used for people with RA. I'm curious of anyone with GPA is on such a low dose. New medications are always done at a higher dose than might be necessary. Lowering the dosage gets worked out in clinical practice over time and with experience. It looks to me like the lower end of Rituxan has not really been determined yet for GPA.
    Finding a maximum dose and an effective dose is relatively easy compared to figuring out the minimum dose.
    When I first started Rituxan I was given 4000 mg. In recent years I get 1000 mg. My last dose was 500 mg. Of course , there are a lot of factors that go into determining an individual dose.

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    Quote Originally Posted by Masha View Post
    I am at 1000 mg every six months. When I am running late on an infusion I really feel it. Now I have the prednisone down to 8 1/2 daily. Will be happy to get to 5. None would be best.
    An ideal goal would be to reach a maintenance dosage of zero, but unfortunately that is not attainable for most people. Many people find they need to continue taking some type of immunosuppressant and prednisone meds on a very long term basis. If you had a very bad case of GPA with the risk of a relapse creating a very adverse outcome, then it is generally your doctor's advice to continue on some maintenance meds indefinitely.

    Finding the lower limits of prednisone is generally not too hard because your body will usually tell you when you are not taking enough. I was at 5 mg a day for several years but when I end up in the hospital with an infection they take me off my immunosuppressant and increase my prednisone meds. I have not been able to get back under 7 mg a day for the last two years. But I keep trying and hope one day to find my GPA symptoms are adequately controlled with a lower dosage of prednisone.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    The MAINRITSAN study was used to expand FDA approval for using Rituxan for remission maintenance. The dosage involved was 500mg every 6 months (I'm currently getting 1g every 6 months myself). In my conversations with Dr. Villa Forte of the Cleveland Clinic, she's convinced this study will result in insurance companies only approving 500mg for maintenance infusions down the line. I don't know how I feel about it myself. With the 1g every 6 months I continue to get negative ANCA tests (whether or not this means anything is debatable). There is a researcher in the Netherlands named Laura Sophie Van Dam at the University of Leister who just released a study in June that claims that PR3 is in fact a good marker for a potential flare in patients who were initially treated by Rituximab (non-CTX).

    FDA Approval: https://ancavasculitisnews.com/2018/...-mpa-patients/

    MAINRITSAN study: https://clinicaltrials.gov/ct2/show/NCT00748644

    Laura's study (Proteinase-3-anti-neutrophil cytoplasmic antibodies (PR3-ANCAs) predict relapses in ANCA-associated vasculitis patients after rituximab)

    https://www.researchgate.net/publica...fter_rituximab

    Yes, I am beyond obsessed with beating this monster.

    Hope this helps.

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    Richard,
    That information does help. Three months ago my insurance company refused to pay for 1000 mg and said they would only pay for 500 mg which is what I ended up getting. It was intended to last 6 months.

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    I was just reduced from 1000 to 500. The latest infusion was early September. I have been 0 prednisone for over a year.

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    Default Re: Lowest dose of Rituxan for Wegener's ?

    That's fantastic that you are on 0 prednisone- and at a lower dose of Rituxan.

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