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Thread: Rituximab

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    Default Rituximab

    I know Rituximab treatment has been talked about plenty of times, but thought it still might be useful for me to give an up to date view for anyone due to start Rituximab.

    Like a few other on this forum I'm on the Ritazarem trial. I had my first Rtx infusion on Wednesday (June 3rd 2015).

    Treatment was due to start at 9am and it actually began not too long after that. Initial problem was trying to get a cannula into my vein. The nurse eventually found a suitable vein and changed the cannula to a smaller size.
    I was given some pain killers (just simple paracetamol tablets) and had a bag of methylprednisolone via the drip (1G/1000mg). Anti nausea and antihistamines were also given via IV. The methylprednisolone took an hour and after that a bag a saline solution was used to flush it through, which took a further half hour.
    I then started with the Rituximab at a very slow rate. After the first hour I'd only had 25mls. The rate was increased every half hour and I think the RTX, itself, took about 4.5 hours. I finally had another bag of saline to flush it through, which took another half hour and then had to hang around a final half hour to make sure I was ok. So the total time was 0900-1630.

    For anyone worried I'd just like to say my experience has been quite positive with RTX. The only VERY slight issue was a slight itchiness behind my ears during infusion. I did feel very sickly at about 10.30pm back home which lasted about an hour and each morning since I've felt slightly sickly (it's now Saturday), but nothing too severe.
    All my other issues have been to do with the other drugs used (pred and the anti-histamine/anti-nausea). The anti histamine made me very sleepy and I kept nodding off briefly, which wasn't a bad thing.
    Many people seem to feel better when on pred, but I only seem to get the undesired side effects. It's really been messing with my brain and emotional state. I've been switching from a chatty mode (like I've had a few beers) to trying to hold the tears back, to getting really annoyed at the littlest thing. I've been on steroids for about 15 of the last 20 years and have really had enough of them now! I'm now on 60mg a day and know that all the other nasty symptoms such as debilitating cramps will be starting soon. Prior to the RTX on Wednesday I'd been on 10mg/day for the last 10 months and my face was slowly begining to return to normal, now I'm going to be ballooning up again

    I'll try to remember to update this thread after each infusion (I am useless and don't get around to writing as often as I feel I should). I'm due another infusion next Wednesday which should be far quicker as I won't need the bag of steroids and the rate that the RTX can be given will be started quicker as I didn't react to it this time. Then I have another dose the following Wednesday. I should have had the fourth infusion the Wednesday after, but I've been allowed to go on holiday to Portugal for a couple of weeks and will have the fourth infusion the Thursday after I return.
    Diagnosed April 1995

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    Hope you get good results from rtx and that the research yields an effective treatment regimen. Enjoy your trip!
    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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    Why did they up your pred to 60 ? Was it just for the infusions. Hope you start to feel better again so you can enjoy your holiday
    Life isn't about how you survive the storm, but how to dance in the rain !

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    That is a lot of pred. I remember getting 100 mg with transfusions and 500 mg when they thought I was having a flare. That amount of pred (1000 mg for transfusion and daily dosage of 60 mg) would certainly make me an emotional roller coaster, chatty, and moon faced too along with all the other pred side effects. Hope it is working well for you and that you getting a correct amount for your needs. We can all empathize with you and hope the treatment is very effective and recovery quick so you can feel better soon.
    Last edited by drz; 06-07-2015 at 01:16 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I think the high dose steroids is due to the trial. At the start of the trial everybody's treatment has to be the same so that all the results collected can be compared equally. As some people starting the trial may be having a severe flare and high doses would be needed, I guess everyone else on the trial has to start off on very high doses. The tapering plan should see me reduced to 15mg by July 29th. After that date I will be randomized as to whether I have RTX every 3 or 4 months for maintenance or return to Azathioprine (which I stopped on the morning of my first RTX infusion).
    Diagnosed April 1995

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    Good Luck mate, good to hear from you. Hopefully you will get onto a stable level state and be able to get off the pred again. Keep us up to date with your treatment and info with the trial.

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    Thank you, this has been very helpful to me. Dr has mentioned RTX to me, not sure when yet. Waiting on biopsy results before he starts treatment been on 60 mg pred 2 mo.

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    I am also in the Ritazarem trial. I had my first infusion in August 2013 and my prednisone was increased to 60mg per day to comply with the study protocol. I was having a flare when I started.
    At the time for randomization I was selected to get the quarterly rituximab infusions. I had my last infusion on 4/8/15 and completely stopped the prednisone.
    I have a follow up with my doctor, Peter Merkel, in August but I am very satisfied with the process and the team at UPenn Hospital and the care they have given me.

    Best of luck and I hope the infusions work well for you as well

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    blu4runner, glad to hear the trial has been good for you.
    I'm hoping to be pred free as soon as possible, but think the study protocol will force me to be on pred for 2 years. I guess they'll need to keep patient's meds as close as possible so that fair comparisons can be made.

    I hope I get randomised for maintenance RTX instead of Azathioprine. It is looking like many years of azathioprine use is the cause of my immature, odd shaped red blood cells.
    Diagnosed April 1995

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    Great, report, Gilders, and thanks for your input, too, blu4runner. I had to look up the Ritazarem trial as I didn't know what it was. How great that it is an international effort by top docs. I hope things continue to go well for both of you and you end up in the randomized parts of the study that you would choose. In any case, never having taken RTX, this gives me some insight and encouragement in case I ever do.
    Anne, dx'ed April 2011

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