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Thread: Rituximab

  1. #21
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    sangye
    How long do the injections take when you go...Ive heard its 6 hours...is that true? How are you feeling a now, a little after the treatment? I am on mtx and 8mg pred, and this seems to be the marker for how low i can go before my PR3 becomes positive again and i begin to lose hearing... I am wanting to try this new drug, but I wonder if I should try cellcept first? what do u think? nicole

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    Nicole,
    The infusions take about 6 hours. The usual protocol is 1 infusion weekly for 4 weeks. (Some people with milder cases or those who are maintaining remission might only have 2 infusions in a month)

    I'm definitely way better with rtx than I was on anything else. I don't get crippling joint pain every time I do something. My lungs feel better--easier to take a deep breath. I'm sleeping very well. I still have extreme fatigue, which I believe is due to the pred, etc....

    Generally they're using Ritux to induce remission and Cellcept only to maintain it. Cellcept isn't strong enough to get you into remission if you have very active Wegs. I don't know where that puts you-- do you have a Wegs specialist?

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    Quote Originally Posted by Sangye View Post
    I don't get crippling joint pain every time I do something. My lungs feel better--easier to take a deep breath. I'm sleeping very well.
    All sounds like positive stuff Sangye.
    Hope you have found something that works for you. You deserve a break!

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    It really sounds like the miracle drug for WG. Sangye, I have a feeling this is going to work for you.

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    Thank you, I do too. Rtx is helping so many Weggies.

  6. #26
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    I'm encouraged by your experience, Sangye, because we all face the possibility of a future flare. The Rituximab infiusions sound like a much easier path to remission or control of a flare than what we went through in past.

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    When I saw my Wegs doc 2 wks ago, I asked him what we would have done without rtx. (Ctx was destroying my bone marrow faster than it could make it) He said "I'd have your hematologist give you something to push your bone marrow more and you'd just have to tough it out." They truly have no other option. I know that plan would kill me-- I don't have the body reserves to survive that. So I'm hugely grateful for rtx.

  8. #28
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    sangye,
    yes, i have an awesome rheumy i love her! I asked her about Rtx today and she said the major thing is cost...hard to get approved since Wg isnt a laveled use. She was all aboard for me getting the inj. she did tell me about a rare virus that it makes you more susceptible to...PML? Ever heard of that? She said theres no cure and it effects the brain. Kinda scary, but she said that its super rare. Im still considered in remission as far as all my ANCA PR3 etc. etc goes, but, seems like I have to be on at least 8mgs of pred or so, and 5 mtx every week. I have a trach bc of ss that i got back in Feb. I read about Gwinn and ger getting cured from her trac stenosis; makes me want to join her! I really want to try the rtx so i can see if i can get of my meds, or at least the pred! and, i would love to not have to have surgery to remove the tissue build up around my airway. I have very limited WG. it only effects my ears and airway. I have lost about 75% of my hearing, and like i said i havve a trach. My rheumy is getting the prior auth girl to call my ins to see if they will approve the rtx, but she says sometimes they also wont unless you have failed on cytoxan. I REALLY dont want to be on that at all. isnt that somethin! they want you to get on a drug that will most likely cause damage they will have to pay for in the long run...doesnt make sense to me! Anyway, any info you have would be great. I am 29 yo and would love to maybe have one more child. at this point though, my ob says NO! dont risk it...but i may have hope with rtx, huh? let me know what you think...also, whats your name? lol...i cant seem to remember how to spell your screen name for my life...maybe its the pred! Thanks, nicol

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    nicol, you are right about us getting first cytox and other life threatening drugs before getting the one that actually works and is so much less toxic. PML you can get from any of the immunosupresant drugs we take as well as rtx. So the choice is clear. As with everything the governments (its not the docs decision but always mandated by the government or insurance co)will give the most inexpensive treatment availble even if in the long run the more expensive is better and safer for the patient.
    Jolanta

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    The acceptance of new drugs and treatments is always a slow process I'm afraid, especially if they are expensive. When I first switched to Myfortic (Cellcept) it had to be paid for from a research budget because it was not an approved treatment for Wegener's, but now it is in the mainstream of drugs used.

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