Rituxan - 8 weeks?

So, I'm a little new at this "posting questions" thing, but I've been reading these discussions since I was diagnosed in May, and thought it was time to throw out some of my own questions/troubles with this roller coaster called ITP.

A little background: I was diagnosed in early May, was hospitalized for a few days, did some rounds of dex and IVIG, nothing has really stayed stable for more than 1 or 2 weeks at a time. I started a 4-week course of Rituxan in mid-June, along with a low-dose of prednisone. Right after I finished my rituxan treatments, I moved from Chicago to MN (which, sadly, meant leaving my amazing hemo in Chicago), but luckily this coincided with stable counts for about 4 weeks (still on pred.) So I go in to meet my hemo, just for a consultation, and guess what? Platelets back down to 3,000! He immediately wants to start me on 60mg of prednisone to get my platelets back up asap, I talk him into doing another round of dex (the idea of taking, and then tapering, 60mg of predisone is horrendous) and then we'll talk about the next course of treatment.

I'm still holding out a little hope that the Rituxan will start kicking in, although I only have another couple weeks where that would be a possibility. Since I responded well to the dex (174,000!), I'm ok for right now, but he wants me to make a decision about the next line of treatment. He pretty much gave me 2 choices (3 if you count a splenectomy): 1) doing a series of regulated dex pulses, every 2-3 weeks or 2) doing 8 weeks of rituxan.

Has anyone ever heard of an 8-week cycle of rituxan? I've heard of people doing only 2 weeks, but no more than 4. And if it didn't work the first time around, why on earth would it work the second? Does that make any sense to anyone?

I also asked him about n-plate or promacta, and he kinda gave me a blank look and said he didn't really use those. I'm thinking about getting a second opinion, but just wanted to make sure I really hadn't missed some research or something about 8 weeks of rituxan before I totally dismissed it? Or is there some other treamtent I should be looking into? Thanks for any input!

P.S. This site is a godsend. I probably would have gone completely nuts when I was first diagnosed had I not had a lot of the information I got from here. You guys are amazing!

The first time I had Rituxan, the hema gave me 6 weeks (doses). I got a 4.5 year remission. I have heard of 8 weeks done by some doctors. This time, my second round of Rituxan, my hema has cut my dose to 4 weeks.

Since your hema is not giving you a lot of choices in treatments, you might consider another doctor. My Dr. is really excited about Promacta. He has had 100% success so far. He wants me to try it if Rituxan doesn't work, but I think I will do fine for the next 4.5 years!

Jess:

Hello - glad you decided to speak!

Well, my first thought is yes, second opinion. This guy seems a bit in the dark ages. You definitely have more options than what he is presenting. If you are happy with those options, fine, but if not, get the yellow pages out.

As for Rituxan - I have heard of people doing 8 rounds, but I have not seen any literature where 8 infusions is any more effective than the usual 4. It may actually be overkill. If 8 infusions work for someone, it is probably because they wouldn't have responded until week 9 or 10 anyway, so they think the extra four infusions made the difference. My belief is it is the length of time that matters, not the number of infusions. The second time I did Rituxan, I got a response after just one infusion (I couldn't finish the series, long story). Anyway, most research shows that less infusions may be just as effective and I'm sure you've read that.

I also don't think that it will work if you do it again when it didn't work this time (but don't give up on it yet). Sometimes if a person uses something like Dex and gets counts up after or during Rituxan, the counts just stick there. That could happen. There are some studies that Rituxan can be more effective when used in combination with Dex....maybe you'll get lucky there.

jessf, where are you in MN? I'm near the twin cities, could suggest a hema. Where did your hema get the idea of 8 weeks of rituxan, could he share any research with you? The research I'm familiar with suggests exactly the opposite - that the 4 weeks used for certain cancers may well be overkill for ITP and instead, either 4 low doses or 2 full doses should be sufficient. With Rituxan I have never heard that more is better - it seems to either work or not. With the cancers it is used for, it is sometimes used as a maintenace therapy but not with ITP.

You should also find a hema that is at least familiar with nplate and promacta!
Erica

If you're going to consider 4 or 8 weeks of Rituxan, please also consider the cost. You should check with both your insurance and your doctor's office. My 4 weeks cost $72,000 (US), and I was pre-approved. I didn't find out until afterwards that I had to pay 20% out of pocket - almost $15,000. It has kept my levels high for 5 months, but has financially bankrupted me as I am a full time college student. Had I known the cost, I wouldn't have done it. I also thankfully had time to take off of school and I don't work. If you do have a full time job, depending on how you handle/react to the treatment can also mean at least one day off of work a week for a month for a 4 week run (6 hour drip for me plus reactions.)
The dex pulse caused severe bone pain in my legs and I ended up in the hospital on morphine from the pain. Not everyone has reactions to either of these treatments, but it *does* happen. So the $4 prescription for the dex also ended up costing me over $20,000 for my hospital stay. Just some things to consider. Make sure you can afford the treatment before you commit to it. Yes, there are charities and groups that can help pay for the costs, but at the time I had NO income and I was still denied. You have to be very poor indeed to qualify for alot of them.

Yeah, I was kinda thinking 8 weeks is overkill, especially if didn't work the first time around. I just wanted to make sure I wasn't completely off-base.

Erica, I'm near the Twin Cities too; if you had some doctors you could recommend, that'd be great! I think I definitley need to get a second opinion and find a doctor that's at least willing to discuss something like n-plate or promacta.

Thanks all!