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Thread: All About Rituximab

  1. #1
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    Default All About Rituximab

    I wanted to start a thread about Rituximab since I will be starting this medication soon.
    I am failing on Methotrexate and since I am in my child bearing years and due to the risks of other cancers with Cyclophosphamide, my doctors believe Rituximab is the best choice for me.

    I would like to hear all stories, good or bad about experiences with Rituximab. For example:

    1.) Why did you have to take this medication?
    2.) Did you fail at another drug first?
    3.) What medications were you on when you started Rituximab?
    4.) What medications were you able to stop once you started Rituximab?
    5.) How long before you were in remission after taking the Rituximab?
    6.) How did it make you feel?
    7.) What condition were you in prior to starting Rituximab?
    8.) How many "rounds" of Rituximab did you have to do?
    9.) How long does the infusion take?

    I can probably think of more questions about Rituximab - but those are just a few

    Any and all information will be greatly appreciated

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    I start my Rituximab on April 30th

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    Great news! You will do well Brooke. Your going to slam dunk WG with the Rituximab!

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    That's great news! I'll post a reply to the rtx topic tomorrow or later--I'm tired from being at JHU all day.

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    Thanks Sangye get some rest!

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    Hi Brooke

    I'll try to answer as many questions as I can, but I'm still really new to Rituximab myself and am still learning too.

    1.) I was started on Rituximab on 12th Feb because I'd had a flare while on Cellcept over Christmas.
    2.) My doc now describes me as a patient with difficult to treat Wegener's because I've failed on almost everything. In the beginning I had 3 infusions of cyclo and 6 weeks of oral chemo. Then I was put on Azathioprine but that was definitely not right for me, so had another 3 months of oral cyclo. Then I was put on Cellcept which held the WG back for 7-8 months but I was put on too low a dose and flared at Christmas. So now I'm trying Rituximab.
    3.) I was on 2000mg Cellcept (upped from 1500mg but too late), 10mg of pred, blood pressure pills and stomach protector.
    4.) I took my last dose of Cellcept the day before I had my first Rituximab infusion and am now on 7.5mg pred
    5.) Not in remission yet - I had two infusions of Rituximab two weeks apart but didn't work as well as hoped so I am now repeating the treatment
    6.) The Rituximab itself was very agreeable without any ill effects except a scratchy throat for an hour or two during the infusion - you are also given some pre-meds to stop allergic reaction. I have hydrocortisone and piriton which makes me very sleepy during the infusion, but after a good night's sleep I feel no different afterwards.
    7.) I'm feeling ok, the flare caused some minor joint pain but I was not suffering from any other WG symptom except fatigue. My docs just want to see this thing in proper remission and because my ANCA result is such a good indicator they want to see it at zero before remission is considered. My Wegs hit hard and fast causing huge nodules in my lungs and wiping out a lot of kidney function, but I healed equally quickly with full kidney function returned and all the nodules have disappeared without scar tissue. So I don't tend to notice the wegs until I'm seriously ill, which has it's blessings but also means I have to act quickly when I feel ill.
    8.) I've now had 3 infusions with another to come - the first two were spaced two weeks apart, then two months later I had a 3rd on Tuesday with a 4th in two weeks time.
    9.) Take a book! I arrived for my first infusion at 9am and didn't leave until 4.30pm. They do take the first one very slowly and increasing the speed gradually to prevent an allergic reaction and they kept for an hour after the infusion to ensure I was ok to leave. The second one was quicker because I tolerate the higher speed well and I left at 2.30pm, I also didn't have to stay after. The third infusion was treated the same as my first due to the 2 month gap but again they didn't make me stay and I left at 3pm.

    I hope this helps you Brooke and that Rituximab works for you. I think it will work for me but I'm just being a bit slow to respond to it.

    Any other questions please ask away!

    Luce

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    Thanks Luce! I hope this round works for you! I'm glad you responded well to it, gives me hope
    I think I will be doing an infusion once a week for 4 weeks. I wonder why some do it different?
    Have a great rest of the weekend

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    Hi Brooke

    You mentioned that you were having rituximab instead of cyclo so I'm guessing your wegs is very active at the moment, this is probably why you're having 4 doses in a month. I'm on a milder regime because we're going for maintenace and remission, rather than hitting it full on.

    I'm glad you have been spared the joys of cyclo, I am also of child bearing age and have had six months of cyclo so I'm not sure if I'm still fertile. Because rituximab isn't licenced for WG and is very expensive I had to try the drugs that were licenced first. The cyclo did work very well but because I can't seem to find anything that works as a mantenance drug afterwards and my docs were also concerned about my fertility, funding for the rituximab was granted.
    When and if we decide we're ready for kids then I'll need to have a fertility test and will find out if any damage has been done. However I'm still very grateful for the cyclo as it saved my life!

    Good luck!

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    Luce~
    It is active in my sinuses right now, the methotrexate helped my lungs but not sinuses. Hopefully the Rituximab will work!!

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    I will be starting my Rituximab treatment tomorrow. The hospital got me in sooner than the clinic. I will let you all know how it goes

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