Rituximab Round Three

[Sangye]

I'm in a good mood, which helps. But I'm noticing that even typing is extremely exhausting. It's like there's no blood in my extremities, and I'm super shaky. Just walking across my little basement is taxing. So yes, the rtx truck has arrived at Sangye's house.

[DEE]

Sangye take care of u DEE x

[Brooke]

Hope you feel better sooner rather than later Sangye.
Yes, maybe the nurse was just talking about allergic reaction rather than how they start feeling at home.
I was not aware you can become more allergic the more times you get it? Good to know in advance I guess.

[marta]

Hope the rtx truck thinks it's on the Autoban and flys by at ridiculous speeds and leaves you in it's dust. Take care Sangye. Hope you feel like a million bucks in no time.

[Brooke]

I just spoke to the nurse at Mayo Clinic. She called me back because I had a question about traveling.
Anywasy, she said they usually do 4 infusions of Rituxan if the patient has an active flare going on. She said sometimes with the second infusion and after if the patient is doing pretty good they do 2 infusions spaced out 2 weeks apart. She said it is still the same amount of Rituxan you receive.

[drz]

Hope you feel better sooner rather than later Sangye.

[Palmyra]

Best wishes Sangye.

What is the experience of others with rtx? I thought it was more 'benign' than cyclophosphamide although equally effective? It is possible I might be switching to it!

pwc51,
my daughter has a 'typical' infusion reaction to rtx (an allergic responce...can be a bit scarey, but seems to be highly individual), especially with the first infusion of a series. They address this with a pre infusion cocktail of lV pred, benadryl and tylenol. They slow down the infusion speed until things are smooth, then speed up. She reports being very tired that day, and a bit fatigued for the next few days.

She has had remarkably quick results with reduction in Weg symptoms and good test results. She has had three series over four years, and is technically due for her fourth. She is somewhat a newbie, and young, so she was never treated with cytoxin. Adverse side effects have only been infection due to immunosuppression, that we are aware of so far.

We would all hope you may not need it, but it is nice to have another heavy hitting drug in the Weg arsenal, and possibly one with fewer side effects.

[Brooke]

Effectiveness of Rituximab in Severe Wegener?s Granulomatosis: Report of Two Cases and Review of the Literature

You may have come accross this before, looks like over a year old but I noticed a couple of familiar dr's names. Including the doctor I see at Mayo Clinic in Rochester, Karina Keogh.

[gurinbasra]

Hi Sangye,

Hope you're up and on your feet real soon and more importantly that you feel much better. Be assured that I am feeling the same weakness! I've had round 2 now, first in March 2009 and now I just completed #2 Jan 27 - I've always had the two infusions two weeks apart. The first time I had it, I was really, really sick so everyday I felt better and better. This time, I wasn't that sick from relapsing and as per the first time, I had no reactions, just pretty much slept my way through the infusions with the benadryl, but for about the first 3 days, I felt like I'd run a marathon! My legs are like deadweight, I've slept for 8 hours and yet feel so tired, but this was for about 3 days after each one, and I am now back at work, but there are moments in the day when I can do no more.

So far, I've noticed my ears have sure been ringing an awful lot - don't remember that from the last time, but then my ears were infected the first time. Anyway, been reading about everyone's bruises and here's from someone who doesn't have vein issues, I still got a really bad bruise on my hand - told my kids it was my bravery badge!

Take care
Gurinder

[Sangye]

The first time I did rtx I was in a severe flare and had been for months. I had just tried ctx but it was destroying my bone marrow. So by the time I began rtx I was already in terrible shape. The second round was only 5 months later, in order to get the Wegs fully under control.

This time, the Wegs was starting to wake up but I wasn't as bad off as in Oct 2009. And we're only doing 2 infusions instead of 4. I'm hoping all of that means I'll recover faster!