Rituxan taking effect after final dose?

Hi guys, first post here.

So after a very brief (around 1 month) stint of having zero platelets at 10 years old, 10 years later my ITP came back about 2 months ago. Noticed unusual bruising and petechiae, counts were at zero. Couple courses of IVIG in the hospital, crashed again and had to go back a week later. Counts were on a steady decline, found out I'm steroid refractory so Prednisone is useless. Occasional half-doses of IVIG since then just to keep the counts relatively high (100's for the most part). Next Tuesday I'm taking my final dose of a 4-course weekly Rituxan treatment but my counts were back down to 12,000 today. I'm told this is pretty normal for folks; either it kicks in around dose 3 or 4 or it takes a couple weeks once the whole thing is done. Any Rituxan patients have a similar situation past or present? This whole situation is a bit demoralizing and I suppose some reassurance would be helpful.

It sounds like your doctor is well informed (unlike many we hear about on the forum.) Yes, Rituxan can take 4-12 weeks on average to take effect so there is plenty of time still. For me it kicked in at dose 4.

Erica

True - Rituxan does take time. I saw an increase the day of my fourth infusion. Went from 3 the week before to 150 that day.

For some people, it can take up to 12 weeks to see an increase.

Thanks guys, my doctor told me basically the same thing yesterday but in the moment it was hard to be anything but upset about the situation since he'd made it sound like it was going to kick in by now. Bit more reassuring to hear it from others.

According to our Hem if Ritux works it typically works immediately. My husbands count more than doubled after his first transfusion but then dropped again and has stayed low (29,000 - 62,000 - average of 32,000 6 weeks post treatment). It's officially a 'fail'.

The hospital pharmacist said the longest response time to Ritux was 20 weeks from the first infusion.

Everyone is different though.

2Jacks, your hema does not seem to be well informed. Perhaps he is talking only about his own experience. I think the doctor should be informed about the research and not just the few individual patients in his practice.

My hema didn't suggest Rituxan because in his experience it didn't work. I asked if we could try it and he said ok, and I've been in remission for several years. Wonder if he tells new patients something different?
Erica

eklein wrote: 2Jacks, your hema does not seem to be well informed. Perhaps he is talking only about his own experience. I think the doctor should be informed about the research and not just the few individual patients in his practice.

My hema didn't suggest Rituxan because in his experience it didn't work. I asked if we could try it and he said ok, and I've been in remission for several years. Wonder if he tells new patients something different?
Erica

Nope, he's informed - he's one of the best in the country and selected because he is one of the best. He's exceptionally well informed and a deemed expert in the field. He's also not paid by the drug companies as many American Drs. seem to be.

Like I said, everyone is different but our Hema feels that results are seen fairly quickly if they are going to work. He didn't call it a fail after 6 weeks without response - we did and his response was "I can't officially call it a fail for another few weeks".

Perhaps your Dr. has learnt from you Erica - good for you - you're one of the approximately 60% Ritux works for. We've tried, it was a fail, no big deal we're in the 40%.

I think the important thing to know is that it can take time to work. From the responses I've seen here over the last 9 years, most take at least 4 weeks or longer to respond. A minority can see a response in less time than that, but my observations have been that that is not the norm.

I wouldn't give up yet. My son had rituximab starting 9th January this year, but its only this last week that I've begun to think it might be working. He just looks better. I don't plan to take him back for a count for a few months unless he starts bruising again, and it could just be a fluke good phase because he does have random increases occasionally. Who cares! :silly:

I finished rituximab on march 2nd. My counts are still in the teens. However, my hematologist said it can take many weeks to take effect. My old hematologist said it was a failure after the last infusion. I am glad to have gotten a 2nd opinion rather than going through splenectomy now.

Also my hematologist knew all about pdsa. He said it was a great resource for patients. I agree! So much useful information!

I had Rituximab (Rituxan) 4 weekly treatments in 2007 it is now 2013 this makes 6 years without symptoms.

I can't tell you when it actually started working because my counts was 3 at the time. I just come off a night shift a resident had grabbed my shoulder gently and the bruise scared the doctor. So he gave me a treatment of winrho/rhogam than the following week started rituxan drug study. (only way I could get the drug free) Winrho/rhogam usually worked between 3weeks to a couple of months for me.

I consider myself in remission because i'm not covered in bruises or spots(as I like to call them). When my ITP was active I tended to live with counts in the single digits. When I have checked my counts they have never been over the 150,000 mark but they were at or above 100 so I was happy.

Julia:

I'd say it's a good remission. They changed the definition of ITP since you were here last and it is now classified as counts below 100. How 'bout that!

I say yeehaw I'm cured lol. I wish but I live in Canada and we still flag counts under 140-150 as low.

They do here too on the reference ranges. There are actually a lot of reference ranges that are incorrect according to guidelines (platelets, thyroid, B-12 to name three).