Rituximab Round Four

**Brooke** · 06-02-2011, 12:35 AM

I'm sorry you are going through this Sangye. Try to stay strong and I hope you start feeling better really soon!!!

**ScreaminMeanie** · 06-02-2011, 01:43 AM

I was thinking about you last night, Sangye and hoping this was getting easier for you. I really hope you feel better soon and that the Wegs dog takes a loooooooonnnnnnnng nap.

**Chris G** · 06-02-2011, 02:05 AM

Oh Sangye I'm so sorry! I was hoping it would be getting easier.......I guess that's not how your body works, eh? Hugs to you.....

**Sangye** · 06-02-2011, 03:00 AM

Thanks you guys. Just one more infusion left next week and then another 2 weeks or so to recover.

vdub, please don't worry about having this type of reaction to the rtx. It's very unusual. The vast majority of people don't notice much of anything when getting rtx. I'm sure you'll be one of them.

**marta** · 06-02-2011, 08:27 AM

Sangye, I hope that after the next one you don't have to go through this for a long time... I know what you'll say, but you never know what tomorrow brings, a miracle of some sort might happen. Who knows. I'm so sorry that you have to go through this horrible experience to get better. It must be so hard to get yourself up and into it and take it with a feeling that it's actually going to help. I use to hate taking my meds at the start and my mom would tell me to not think that way before taking them and instead tell myself that they are great and are going in and going to help me. It was tough following her advice. I still have a hard time swallowing that nasty cocktail and thinking that it's all great, but I guess I'm here because of them, so she's right. Stay tough and live long and prosper as the Vulcans say.

**Sangye** · 06-02-2011, 08:36 AM

Yeah, even though I know how it'll make me feel I still view the rtx as healing nectar and I still keep a door open in my mind that maybe it won't be bad this time.

We've tried the waiting between rtx and I just get worse and worse. The Wegs dog wakes up as soon as the rtx barely begins to wear off. So we're just gonna repeat it every 6 months and hopefully that'll keep the Wegs from waking up at all. And it'll be the 4 infusions each time. We've learned from trial and error!

**marta** · 06-02-2011, 09:14 AM

I feel that way about the RTX too. So the plan is for you never to have B cells again? Do you think sometime in the future after a few infusions, they might reconsider this attack plan? I know it's really freaky to be experimenting and let the door stay open to see if that hungry, snarly dog decided to come in again or if it has gone down the neighbourhood looking for food elsewhere.

**Sangye** · 06-02-2011, 09:29 AM

I don't know about forever--no one can answer that-- but in the foreseeable future the plan is every 6 months.

It's been too many years of active Wegs already: One year pre-diagnosis. Then after nearly 8 months on ctx and 2 months on mtx, the Wegs was not under control. Then 2.5 years on Cellcept and the Wegs was active the whole time. Then repeat ctx and 4 rounds of rtx for the next 2 years with Wegs activity returning constantly.... I accept that the Wegs dog on my street is gonna stay awake unless we do the treatments every 6 months (ie, before he wakes up again). I think we've proven--to my satisfaction and to Dr Seo's-- that we won't get a different result if we try the wait and see approach again and that it will only cause further damage.