Down to 14 since Friday - questions re Rituxan??

Down another 4k since Friday - now @ 14. Hemo wants to start 2x/week rituxan in the next few days. All I know about Rutixan is what I've read here and a little internet.

How long might a treatment take (2 or 4 or 6??? hours)? I've read the first may take several hours - really?

Are their any longer lasting typical reactions beyond the potential infusion reactions?? For example nausea/headache (pred already does headache - can it get worse??

Steve:

First, I need to understand the "2x/week" that you quoted. Surely you don't mean two infusions a week?

The first infusion can take an average of 6 hours. They do it slow to prevent any reactions. If you don't have any adverse reactions the first time, you won't have any after that, so they speed up subsequent infusions. They premedicate with Benedryl, so you can pretty much plan to sleep most of the time. I just sat and stared at the same page of my book that I planned to read. Time does go pretty quick.

Aside from initial infusion reactions, there are several other risks. Reactivation of Hep B can occur if you've been previously exposed. There is also a risk of PML which is fatal, but this usually only occurs with severely immunocompromised individuals. Another risk is serum sickness, which I've had twice due to Rituxan. It occurs two to three weeks after the first infusion. It's a type of delayed allergic reaction that results in fever, headache, very swollen and painful joints, etc. It takes a few days to recover from that, and you can't move around much during that time.

Other than that, most people tolerate Rituxan very well with few side effects. Keep in mind that it takes time to begin to work...the average is 3 to 12 weeks.

I must be an odd ball because I had a reaction during the first infusion, then nothing during the second - some burning at the infusion site during the third and total chest pressure stopping the infusion completely during the fourth. I couldn't finish the treatment.

But - it's two weeks now since that last infusion and today's labs showed over 100! I was at 20 when I started it and off all other meds. A lot of people seem to still be on steroids when they do the Rituxan.
I'll never be able to have it again so I hope this will last awhile!

As far as after effects - I currently have a a lymph node that swells for half a day, then goes down and swells back up again. Not sure what that's about or if it's related. My knees are also really jacked up - but that started after I got off the Pred before I started the Rituxan. It seems to be worse now though.

Anyway, if you end up going the Rituxan route, be sure to post your progress! It's only once a week though - for four weeks.
Best wishes!

Sandi, you're correct - not 2x/week. I hate what pred is doing to my mind (constant headache, fuzzy, lack of concentration, memory) will sure be glad when this is over. Not responding anyways. IVIg will be 2x and rituxan weekly for four weeks.

I recently finished Rituxan, I'm thinking it was 6 to 7 weeks ago. The first transfusion lasted 6+ hours. I had a slight reaction so they stopped it for a bit then it was smooth sailing. The remainder transfusions went well, no more than 4 hours from start to finish. I didn't have any side effects, well, I did have and do still have joint pain but I'm not sure if that was from the Rituxan or the NPlate. I was on both at the same time. My counts have pretty much stabilized for now. Anywhere from 44 to 94 for 4 weeks now. I go again tomorrow for a CBC. I think they are a little lower than the 79 two weeks ago but not much lower. The doc mentioned to me that he thought the Rituxan would only last for 3 months. I've previously heard anywhere from 6 to 9 months. I dunno, I guess only time will tell! Keep us updated.

Steve - no problem, been there! I remember the fuzzy brain well!

Dropped another 4 since Wednesday so now 10. Bottomed @ 0 in 2001 - looks like the same behavior again. Minimal bleeding, in fact mainly from the draws. Another CBC Monday, if I drop at the same rate of the past few I'll soon see 0.

Wonder if that'll make me a candidate for an emergency IVIg??

Rituxan + Dexamethasone + Tagamet scheduled next Friday (8/6).

IVIg scheduled the following Mon & Tues (8/9-10).

Seems my hemo is more confident than I'm feeling right now!

Should be an "interesting" week!

I'll be praying Steve. In the long run....it's gonna be alright!

Steve - try to focus on the symptoms, not the numbers. When you're down that low, it's all pretty much the same. If you have few symptoms, you're doing okay.

Thanks - it's to easy to focus on the numbers and get overwhelmed.