Rituxin maintenance dosing

[marta]

My doc refuses to use RTX for maintenance for me. We use Imuran for maintenance. I went to her a couple of times last year thinking things are smouldering and she explained to me why she doesn't want to use it. She said that there is no info on long term side effects. Her concern is that it might mess up my bone marrow's ability to make blood. Also it's the only one I have available as a big gun (CTX is no longer an option for me) so she doesn't want to use it and loose efficacy of the drug for when I really need it to beat down a flare. She said she wants me to be a healthy 70+ year old, and I'm totally on board with that. I trust her completely and her points make a ton of sense to me, so I've only had RTX twice to beat down the beast, last one was January 2012 (first round March 2011 when we realized the CTX isn't holding up its end of the bargain.)

She is a good doc, trained at Mayo, worked at CC, specializing in Vasculitis. She knows her stuff, and has many WG and Vasculitis patients, a bunch of which I sent to her - ha ha.

[pberggren1]

I get one infusion of 1g every 6 months or close to it. I don't want to take it as maintenance but I have no choice really. My disease is so severe that it requires RTX to be used as a maintenance drug. Most people don't have severe enough disease to warrant using RTX as a maintenance drug thankfully. It is true that there is not much data out there for RTX used for Wegs maintenance but some good data is coming soon up the lines.

[Alysia]

I get one infusion of 1g every 6 months or close to it. I don't want to take it as maintenance but I have no choice really. My disease is so severe that it requires RTX to be used as a maintenance drug. Most people don't have severe enough disease to warrant using RTX as a maintenance drug thankfully. It is true that there is not much data out there for RTX used for Wegs maintenance but some good data is coming soon up the lines.

my WG is mild but still rtx is my maintenance med because that mtx didn't work on me (didn't do anything positive against wg symptoms, just hair loss and more susceptibility to infections) and I can't take Imuran because it caused me vommiting and dieahrea.

[mmthomm]

My doc's thought is that manifestation of Wegener's was so bad that we can't risk a relapse so using big guns from the beginning...I can definitely see where they are coming from with not knowing what the long term side effects of Rituxin and wanting to be cautious with that...


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[pberggren1]

Ya, there are some where RTX is the best option for maintenance. If other drugs do not work and RTX seems to work then I would go with that option.

[mmthomm]

I've been really pleased with how it's working so far and even happier with the lack of side effects! Thanks for weighing in Phil


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[pberggren1]

Most of us are blessed to be able to use the RTX for sure.

[me2]

[LisaT]

It certainly seems like the wonder drug. I understand (finally) why it is not being prescribed for me. (They're seeing if they can 'save it' and keep things under control with Imuran and pred and bactrim... Seems it might be working). I'm glad it's there for those of you who need it! When it is referred to as a maintenance drug does that mean you will need infusions indefinitely, or do you at some point stop and see if you can maintain remission without it?

[jvilner]

Lisa I'm on 200 imuran 17.5 prednisone weaning to 15 bactrim vit d. Was also told to hold off on the rtx for when/if need. My ears fill with fluid if I have no tubes. But it does not become glue ear like before. I have swallowing problems that is still not resolved. I choke on pills so I crush all. I don't know what they are waiting for on how to tell I'm in remission. Joint pain is gone. I get tired from the meds I think and have foggy head. I hope for the both of us that things get under control!!