Rituximab Round Four

[Brooke]

I have my follow up at Mayo the end of this summer, I will have to ask her about this.

[Sangye]

It'll be good to have the extra info from another Wegs doc. I see Dr Seo in June or July and will ask him, too. Since rtx is being used much more he might have new info.

[Chris G]

So Sangye - you're back on the board tending to all of our needs , but how are you feeling today?????

[Sangye]

LOL I feel pretty lousy but better than yesterday. Every time I get my hopes up but this is the usual pattern-- feel like death on treatment day, next day not as bad, then 2 days after treatment everything goes downhill. I'm still really weak today and have shuddering chills. My face is hot, hot, hot and I don't mean good-looking.

[jane]

Hi,
am off for my next dose of Rit. on Friday. have to say it has been a miracle for me but I have to gut out the 6 weeks of feeling rubbish in order to get my life back. I find that once it kicks in I am mostly free from the worst symptoms - coughing, aches, sinus probs, backache, colitis etc. Thinking of you and just remember we are lucky to have this treatment. xx Jane

[NicShaf]

Hope you're feeling better, Sangye.

[Sangye]

Jane, you are one of a small percentage of people who also has this negative reaction to rtx for 6 weeks. I might be in more of a celebratory mood if I could actually get my life back in between treatments!

[Brooke]

Hi Sangye, I cant remember if I have asked you this before. If your B-Cells are gone from your first Rituxan Infusion, why would they do another round so quickly? It obviously must do something if they would do it so soon. My doc said I would do the Rituxan again once my B-Cells came back. I suppose if I was having major issues between rounds, they would do something....

[Sangye]

It's a good question. In my case it seems that I start to get symptoms of active Wegs a few months before the B cells repopulate. I don't know if it's theory or if it's been proven, but I've read that not all the B cells are destroyed with rtx--that some actually hide in the body. I'll ask Dr Seo about this at my next appt.

When I did my first round of rtx, I was in a severe flare with alveolar hemorrhaging. It stopped the hemorrhaging but a number of other symptoms continued. We repeated it within 5 months which got things fully under control for the first time in 4 years. Likewise, in February the 2 infusions made my lungs feel better but everything else continued to be a problem. It might have been enough rtx to zero out my B cells on paper, but it wasn't enough to control the Wegs.

[ScreaminMeanie]

I hope you are feeling better today, Sangye.