Can we talk about RItuximab?

Hemo is suggesting Rituximab.
So I was doing the reading - umm 3% of people who use it get really sick and die?
Anyone receive any wise words they'd be willing to share about this statistic before trying it?
3% is low and I know you have to weigh the pros and cons and make your own risk assessment - and I'm miserable on all these steroids but -
You know how it is.
I'm a worry wart.
:S

You could insist on low dose.. four doses of 100mg. Fewer side effects and studies say it works just as well.

www.haematologica.org/cgi/content/full/93/6/930

I don't really have any words of wisdom for you, but I did have the treatments a year ago and it has kept me from treating since then. I have stayed in the 50K range for the past year, just had my count done last week, and my count had jumped up to 76 all by itself, (yaay!!) That's the highest it's been since dx. I wish you the best of luck and lots of high counts, whatever treatment you decide on.

Andra

All the warnings can be scary and shouldn't be taken lightly. This is pretty heavy stuff. With that said, I treated with Rituxan one year and 3 months ago. I have had counts in the 200s ever since. The infusion process was a piece of cake, although some have reactions. Of course I would recommend it because it worked so well for me, but I can see how you want to weigh the pros and cons. In my opinion, the pros far outweigh the cons! I had my infusion and then tapered off pred. during the process. I have been in remission for over a year and off of steroids (yayyyayay!) for over a year. Do your research and make the best decision for YOU. And you know you can ask anything on here if need help!

Natalie

Michelle:

If I remember correctly, most of the deaths are due to tumor lysis syndrome (TLS; kidney failure due to fast breakdown of cancer cells) which does not apply for ITP. Another concern is PML which is very, very rare. This can occur when the JC Virus is activated (which is dormant in some people) and usually occurs when a person is very immunosuppressed.

Most of the time, Rituxan is quite safe. However, I do believe it is a treatment not to be taken lightly.

Sandi-- you've been in remission for 5 years since your last rituxan, correct? THAT IS AWESOME! I hope I am the same as you! ;0)

Natalie

Yes, five years...or maybe it's six? I don't think Rituxan is the sole reason for the long remission.

Oh, I also wanted to add that people don't just 'get sick and die'. Most of the people who died had an underlying condition. People with ITP only are usually pretty healthy otherwise.

I just finished my last treatment of Rituxan (Rituximab). I did some research before taking it and decided it was the right thing for me. I'm also taking NPlate, tho I haven't had a shot in 2 weeks now and my counts were 288 last Friday so I'm thinking the Rituxan is working. I only had a slight reaction on the first treatment, stuffy nose, itchy mouth and sore throat. They stopped it for a bit and gave me some steriods then it was ok. I don't know how many people get Rituxan but the odds of having a bad reaction or worse seemed minimal compared to what it could do. I guess I'm not so much of a worry wart! I figure, I can't worry about the car coming toward me while I'm driving down the road will swerve and hit me head on. The odds have got to be similar to someone dying from Rituxan. But in the long run...you gotta do what you feel best with. Please let us know.

My daughter Caitlin had ITP for a year before she tried Rituxan in 2002, at age 15. IVIG and Win-Rho were not effective for her, and she was having many side effects after being on steroid pulses for a year. Her diagnosis had been traumatic, at 2K and bleeding, and her counts kept dropping below 25K between treatments. We never wanted to see 2K again. She got the standard 4 doses of Rituxan, one week apart. That was before they found out about PML--and Sandi remembers correctly, it was tumor lysis that caused most of the problems in folks with non-Hodgkins lymphoma, a type of cancer. There were also heart/breathing problems in some older folks-so I didn't feel that the actual administration of Rituxan would be much of a problem for Caitlin. Caitlin's BP did rise, and they had to slow the infusion once, I think--but that was 7 years 8 months ago, and counting. Caitlin said she felt like a bit of a guinea pig--and she did get achey leg bones after doses 3 and 4.

Besides PML, the worst Rituxan side effect I've read about here is serum sickness, which lasts a week or so(?), sounds painful, temporarily limits your mobility and leaves you unable to ever have Rituxan again (it's like an allergic reaction, and can develop even after common treatments like antibiotics).

But do WE love Rituxan?? Of COURSE we do! It has allowed her to resume her life as she knew it, before ITP and steroids and hospitals and needles... She went off to college with everyone much more confident in her health. We only wish we knew why Caitlin has responded so well and for so long. Her counts went over 100K before she finished the 4 doses, hit a high of 293K more than 6 months later, and was still testing well (annually) over 200K up until 2 years ago, at least, when we discontinued all CBC's. No symptoms to date!

Wishing the same for each and every one of you here--With Rituxan or without it! To infinity and beyond! Ann, Caitlin's (23) Mom

Thank you everyone - I know it's a miracle drug for many people.

Sandi - when you refer to being "very immunosuppressed," does that mean again, having some other issue going on?
Aren't we all very immunosuppressed because of the steroids?

I've been doing Dex pulses every two weeks lately and I just feel generally tired and run down all the time.

Michelle:

The articles I've read seem to indicate that the people who contracted PML had been on chemo or CellCept or some other strong immunosuppressant when they used Rituxan. I'm not sure how much Dex would suppress the immune system, but I'd be even more leery if you were asplenic on top of that, or had dangerously low white cells.

No, I wouldn't say that people are very immunosuppressed because of steroids...somewhat, but not overly. It generally takes more than that. The only person that I've ever known of that died from being immunosuppressed was the wife of a former member. She was asplenic and was using Rituxan and steroids. She became septic from an infection and died very quickly (within 36 hours of onset). It was a very difficult time for us here because we were very attached to the member and he contributed a lot to the Forum. To make matters worse, they were celebrating their anniversary in Hawaii. I haven't spoken about this in years. Anyway, you have to have several things in the works to be considered really immunosuppressed. How long have you been doing Dex and at what dose?

Sandi - I am on 40 mg Dex for the 4 days at a time pulse. I tapered off Prednisone about 6 weeks ago and dropped, just like the first time I was on it.
I've done two Dex pulses now and I am probably going to do the third this weekend - I've been doing them every two weeks.
I have my spleen still.
I was in the 20's when I started the Dex but for the past two weeks I have been holding at 40. I wish I could at least get up to 50 but I'm thankful for 40 when I read some of the other posts here. I just have a few bruises on my wrists and that one still on the back of my leg - you might have read my poem dedicated that one.
I don't have any bleeding symptoms except two of those little red dots on the inside of my cheek.

Several days after the 4th day of the Dex are really difficult. I feel like I have finally recovered and then it is time to do it again. Not sure how long I can keep this up. Quality of life, ya know?

My daughter, age 24, was diagnosed w/ ITP in February, 2010. She was placed on IVGB (did nothing), then corticosteroids (did not agree with her). She has weaned off the steroids and has gone through a full course of Rituxan. She is at 2 weeks after finishing her fourth session but her count is still at 16k (it has been fluctuating between 13k and 16 k for a few months). Her Hema is telling her that the Rituxan is not working, but I have read that there may be a delayed response. Can anyone speak to the rate at which the platelet count may be expected to increase if the Rituxan is working? Is it a gradual increase, or can it be low for sometime and then suddenly shoot up? I am not finding any data on rate-of-response for Rituxan. Also, has anyone gone the Rituxan route without any other concurrent treatment, i.e., Rituxan alone?

Thanks,

Andy

Rituxan can take a couple months to kick in supposedly. One or two on this board have reported a rise in platelets a few months after finishing Rituxan. Hard to say for sure if the Rituxan caused it or it would have happened anyway. Most of the delayed responders reported a slower increase I believe, while the earlier responders had a more dramatic increase. Many of us have a response to Rituxan around the time of the fourth infusion. Your daughter could still respond.

I was taking prednisone at the time I had Rituxan but it wasn't helping much. I had a response at the time of the fourth infusion, then a year later I had a response after the second infusion.
Good luck - have your daughter pop in here!
Erica

Andy,

Like your daughter, I am 24. I have had ITP for a little over a year. I was also dx in February. I was dx in 2009, I was 22. First course of treatment for me was prednisone to raise my count of 17,000 to a safer number. I was discharged from the hospital with a count of 35,000. Prednisone raised my counts up to 185,000 but as soon as the taper started they fell back down to 32,000. My hemo decided that my best choice was Rituxan. I didn't feel comfortable removing my spleen so that was the route I took! It was a piece of cake during the 4 infusions. My count raised steadily after each treatment. It went from 76,000 (due to prednisone) up to around 120,000, to 140,000 to 200,000. My last count was 242,000! I was weaned off of steroids during the course of the treatments and I was elated to see that my counts held up on their own! I have been in the 200s for over a year now! Some people have some slight discomfort during the process. Of course, Rituxan is not a treatment to take lightly, but many have great results from it! Of course, I think it is awesome because it worked so well for me! Ask as many questions as you like. We are here to help you! I hope your daughter has a remission in her future!

Natalie

Is there a particular level that you have to be at or under to have Rituximab?
Or is it just up to the Hemo?

I believe it is up to Hemo and you to decide. My wife is currently getting the Rituxan.
Hope it works for you, god bless.

We are going to try Rituximab this summer for my daughter, she has had ITP with a positive ANA of 1:320 for 7 months now. Did any of you ever have a positive ANA test. I'm just wondering if it will make a difference in the outcome. Thanks for any info you can share.
Shauna, mom of Emmy diagnosed 11/09

Yes, I have had an elevated ANA. I'm not sure what you mean by 'making a difference in the outcome'.

I think the question is whether the high ANA is an indication that the ITP is secondary rather than primary ITP. And if so whether the rituximab works differently.

With secondary ITP it is said that if the primary disease can be controlled, the ITP will be controlled also. So treating the primary condition is the main concern. With primary ITP the aim is to treat the ITP directly.

Rituximab is said to work in ITP for less then 50% of patients anyway so when it fails who really knows why?

Yes, thanks that is exactly what I was indicating. It is very concerning to me to put my daughter through all of this and then possibly not have it make a difference. Just wondering if there were any statistics about the results. The little bit I have read seems very promising.
Thanks, Shauna

Well, Rituxan can be a treatment for a lot of autoimmune disorders, so it probably wouldn't hurt.

I was on Rituximab treatments for 2 yrs, and then it just suddenly quit working for me!But i wish you the best of luck:)

I'm relatively new to ITP and this site. Diagnosed in July with counts of 3. Never got above 20 with IVIG and prednisone. Did Rituxin for 4 infusions and numbers finally started to climb, 100, 150, 200 and now 261, 7 weeks after last treatment. (I know, yeah!) I'm tapering off the steroids which has been quite difficult, severe fatigue and headaches. I'm curious about my Hemo's latest suggestion - 4 weeks on/4 weeks off Rituxin for the next two years. I've tried reading ALL the posts on this site (not sure I've achieved that goal just yet) but no where am I seeing anything along those lines. I have seen several posts about a remission (although could be brief) after just the 4 doses. Wondering if anyone else has gone this route????

I've never heard of that regimen with Rituxan and wonder where in the world your doctor got the idea. Do you have anything besides ITP? Because with your response to rituxan and just ITP you can expect to have a remission that could last for years. There is no reason to continue to treat. If your counts drop you could treat again. I have never seen any research with a dosage like you are describing.
Erica

No, nothing other than ITP. I did see another post someone had been on it for two years, so I wasn't sure how out of left field he was playing. I am thinking it may be time to see a new doctor if he really pushes it. I'm just trying to enjoy my high numbers!!!

I have not heard of that treatment before. If your numbers are very good now they can stay that way for years (I had 4 1/2 year remission from 4 wk treatment of Rituxan). I would definately get a second opinion on that- also I cant imagine a health insurance company approving that, Rituxan is very expensive!

Kim,
Here's an interesting paper about using Rituxan as a maintenance drug for ITP. But it is not given every 8 weeks as your hema is suggesting:
ash.confex.com/ash/2010/webprogram/Paper28926.html

Hi Kim:

Sounds like you've had a great response! You're the second person this week who has a doctor suggesting Rituxan maintenance. I cannot for the life of me figure out why that would be necessary. Rituxan can induce remissions and when that happens, no treatment is necessary until the remission ends. No one can predict how long that will last - could be years. If that happens, you're basically getting Rituxan infusions for nothing as counts would stay up anyway.

There is no reason to keep getting a heavy duty drug to prevent platelet drops. Counts in the 200's are not crucial to life. When they start to drop, you treat. You have an advantage in that you already know what works. Counts above 30 are considered safe and even if a person drops below that, it's highly survivable.

After my first round of Rituxan, I had 13 months treatment free. Counts dropped and I had one infusion of Rituxan. I've been in remission since then for 6 1/2 years. Imagine if I'd had maintenance! Waste of time, money and added risk of side effects.