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Thread: Rituximab

  1. #31
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    Hi Eduardo,
    Glad to hear Rituximab has been working well for you. Especially good to hear you're coming off the pred quickly. I've been on pred for many years and the side effects are bad.
    As for remission, no one can tell how long. Some people can only achieve remission whilst on drugs such as pred, others can be drug free and if really lucky never relapse. I don't think the method in which you achieve remission (rtx vs ctx vs mtx etc) has an effect on how long remission is likely to last, but there is research into which method/treatment is best for maintaining remission (daily tablets such as azathioprine vs occasional infusions of rtx, etc)

    I wish you well in your remission and hope it lasts a very long time!
    Diagnosed April 1995

  2. #32
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    Hi Gilders!
    I forget to tell all my WG history. Diagnosed in 2004 after 3 years started the symptoms. Remission whith ctx + pred, 10 years maintened whith azathioprine. A flare last year, the doctor recomended RTX because the side effects of ctx. Now I'm 5mg of pred in alternate days + azathioprine (I've never stopped that during RTX treatment), in July I'll stop pred. My question is because sometimes I become litlle anxious about flares and as RTX treatments are pretty new, I want to now about the ones who is in long time remission after RTX treatment.

  3. #33
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    Gilders,
    Thanks for sharing your experience with Rituximab.

  4. #34
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    Thanks for all the updates Gliders, all the best with the treatment.

    Regards Woz.

  5. #35
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    Gilders,so glad to hear the infusion went well. Like Geoff said now its time to sit back and enjoy your holiday. Hope the inr turns out well....Take care
    Life isn't about how you survive the storm, but how to dance in the rain !

  6. #36
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    Not so much an update on Rituximab treatment, but just wanted to mention that my appointment with neurologist went well - Wegener's hasn't damaged my brain (about the only part of my body it hasn't damaged).
    I've also been banned from taking codeine based pain killers for my severe headaches. Apparently when the pain relieving effect of codeine wears off it causes headaches, this leads to a vicious circle of using codeine to combat something that it causes itself.

    The holiday/vacation in Portugal was perfect. Just what I needed and hopefully the break from blood tests and cannulas may have given my veins chance to get ready for my 4th and final rituximab infusion on Thursday (which I'll report on on this thread).
    My INR did go well. I was surprised as I'm still bruising ridiculously easily, but I had it rechecked at my local hospital and it was still in range.

    Overall everything seems to be going well. My main concern is my feet and ankles which are still swelling badly, so long as it's not due to my kidneys becoming worse, I'm happy.
    Diagnosed April 1995

  7. #37
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    I so happy that your trip was refreshing and restful, you really needed that. I am wishing you all the best with your 4th infusion. Take care and let us know how things go for you.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  8. #38
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    Hello again,
    I'm back with my report on my fourth and final (at least for a while) Rituximab infusion.
    Even though I made sure I was well hydrated and my veins had had a 3 week break from needles and cannulas, I had my usual problems with the cannula. It took 3 cannulas and 3 nurses, but once the third one was working, it lasted for the whole duration.
    Much like infusion #3 the infusions of anti histamines, anti nausea, rituximab and the flushes in between went perfectly. No ill effects whatsoever, just tiredness.
    Travelling on the way home I slept most of the way and had slight nausea in the evening. I put the blame of the extreme fatigue the couple of days after infusion #3 on the fact that we went to Portugal immediately after my treatment, but after this fourth infusion I was also extremely fatigued the whole day after.

    My overall conclusion on Rituximab is that there is nothing to worry about.
    Apart from during the first infusion when my face felt ever so slightly hot and flustered, the only side effects have been a little nausea and fatigue. Admittedly the fatigue has been pretty crushing for me, but as I already suffer from severe fatigue, maybe the effect on other patients won't be so bad. The longest this "worse than usual" fatigue lasted was 48hrs, so nothing really to worry about.

    I would strongly advise against driving home after the infusions. Even if the first one goes well, as I found the fatigue post infusion was worse on my last 2 infusions.

    If there's any specific questions anyone wants to ask, feel free to reply to this post or send a personal message.
    Diagnosed April 1995

  9. #39
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    Thank you for this post. I am going to do Rtx infusions soon. (I had a second opinion at the Cleveland Clinic). You answered a lot of my questions! I know there are probably thousand ways to give it but is 1 infusions/ every week for 4 weeks common?

  10. #40
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    Hi Miska. 1 dose per week for 4 consecutive weeks is not usual, it is a higher than usual dose that they have decided to use for the Ritazarem clinical trial that I am on. I was told that I had the option of the trial or regular treatment. Regular treatment would have been 1 rtx dose, then 2 weeks later 1 more dose. This would then be followed by a maintenance dose once every 6 months.
    On the trial, if I'm randomised to continue with rtx as maintenance, then I will have another dose every 4 months. Therefore, on the trial, I'll be having roughly twice as much rtx as the regular routine. I can't really say whether that's a good or bad thing.
    Diagnosed April 1995

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