All About Rituximab

[Sangye]

I am wondering if I am having a flare like my usual ones if rtx will work to knock it out or will it take ctx. Who here has had success with rtx knocking out agressive Wegs either initially or on a relapse. This is concernig to me for future use.

I have! My lungs hemorrhaged last summer, which is considered a severe flare. The first round of rtx stop the hemorrhaging, and the second round got the disease under control.

[LisaMarie]

i will take it easy i peomoze....tolerated tea and crackers ....my want me on rituxan first and nothing else has worked so i hope i am as lucky as every one else.:just wanna lower my pews as soon as possible 60mg sucks .

[me2]

I have failed on two rounds of Rituxan, is there a study that show it induces remission at an equal rate to Cytoxan? For me it does not.
That is not a study, but it is my experience. Rituxan may have given me short term benifits but only real studies can compare the two treatments. Maybe I have missed them. I am happy for anyone who achieves anecdotal results - like myself, but to extened advice the gold standard is studies. I would also accept the experience of doctors who have treated a large number of patients who could point to the experience of patients who could share their experience with us here. Otherwise , it is dangerous to draw conclusions from the most vocal testamonies - like me.

[Sangye]

Me2, yes the RAVE study last year showed rtx induces remission as well as ctx, in fact a bit better. This is what the Wegs docs are seeing in practice, as more patients are trying rtx as a result of the RAVE results.

I forget-- were your 2 rounds of rtx 2 infusions each or 4 infusions each? I think I've asked this before, but you know.....

[LisaMarie]

my understanding is getting it over 4weeks works better than day then day 14&15 you get a lower dose .....i didn't sleep well last night but i did not throw up either....still feel like a Mack truck ran over me and quesay in the tummy...but good otherwise ...i think all of us WG are bonded by this disease that effects all differently and different things work for all of us ....i could not handle methotrexate 10mg weekly...but others do it just fine....so i am gonna stay positive and hope in a year i will be on maintance ritixan and low dose prednisone...can not get a detailed game plan on medications from the doctor because he says 'we will have to see how u react each case is individual".....i have to agree with him after meeting u all.....we need to share because it helps us all

[Sangye]

They give the 2-dose rtx treatment for less severe disease and the 4-dose for severe.

I'm hoping that in a year you'll be off all your drugs, Lisa Marie!

[elephant]

Sangye less severe would mean no coughing up blood?

[Brooke]

I had 4 infusions once a week for 4 weeks. I don't feel I was that severe. Mainly sinus involvement and some lung involvement but no hemorrhaging or anything like that. I was on 20mg steroids at the time (May 2010 were the infusions) and am now down to 5mg and doing great so far.
I hope you get something that works for you me2.

[elephant]

Brooke how is your sinus involvement? Do you have congestion? stuffy nose? ear plugged up? Is all those symptoms gone?

[Brooke]

Elephant - I have had 2 sinus surgeries in the past (before being diagnosed with wegs) and so I am wondering if that has helped some, I do not have any congestion or stuffy nose. My ears still buzz, it doesn't bother me because it is pretty quiet and I am used to it by now.
The main thing I have noticed since the Rituxan is that I have so much energy now and I am not out of breath going up stairs or walking.
I was so used to coughing so much at night and not breathing very well, and now that I am breathing fine and not coughing at night, I find myself waking up about 1:45 am every night just wide awake, like I am ready to get up for the day. I have been going to bed between 9-10 pm. I also get up at 5:50 am and feel great!