Is Rituximab a cure ????

After trying other treatments unsuccessfully I was informed by my consultant that he wanted me to undergo a treatment of Rituximab.
Before the treatment my count was an impressive 4. After treatment no. 1 my count rose to 17 after treatment no. 2 it rose again to a respectable 51. Then after treatment 3 it once again rose to 115 and after my final treatment, treatment no. 4 my count shot upto 158.
Does anyone know what the success rate of Rituximab is ? Or how long the higher counts are likely to last before they start dropping again ?
I'm obviously very happy with the results but am realistic enough to know the high counts are more than likely only temporary, I just want to get an idea of how temporary.

I've got a mixed message from my consultant, on one hand he appears happy and he informed me that I have responded extremely well to the Rituximab and he is very surprised as to how quickly it has worked but he is still talking about me most likely having to have a splenectomy!!

Can anyone shed any light??

JD:

Rituxan is not a cure. You had a great response though! The average time period that Rituxan lasts is a year. The first time I had Rituxan, I didn't have to treat again for 13 months. I had Rituxan again, and have been in remission for 6 years now. I don't truly think Rituxan did it; I think it was just a combination of things that caused a long remission. I don't consider myself cured.

No one HAS to have a splenectomy. It's a choice.

JD1:Sandi was very fortunate with the Rituxan. My first treatment generally gave me a good platelet count for almost 8-9 months.... then the count started to drop. The re-treatment was a total failure....absolultely no increase in the platelet count. There is data that shows and possibly predicts that Rituxan re-treatments can be failures.
And yes, I did have a splenectomy a few years prior to the Rituxan. It also failed to stabilize the platelet count. Perhaps you could be one of the fortunates with the Rituxan regimen...but no guarantees.

I'm riding high on Rituximab right now too! I didn't respond as quickly as you did but this week marks week 3 after completing the infusion series and I have gone up each week - hit the 130's this week.

But also like you, I am skeptical.
I was unable to fly, as per doctor's orders, and had to cancel a vacation trip prior to Rituximab. Now I would like to re-plan and take the trip but the thought of purchasing tickets for three months from now has me feeling uneasy just because I am afraid I might drop.
I want to enjoy this time while it lasts! It's only recently that I have noticed I stopped looking in my mouth for spots after I brush my teeth.
I can't believe I have a decent count while not on any meds. It's like an early Christmas miracle.

It's not a cure. Sure would be nice it it was though. I won't be able to be re-treated in the future due to an allergic reaction.

I finished Rituxan on 6/4/10. I can't say what it did though because I was on NPlate at the same time. My counts went from 200 the week after the first treatment to 125 after the 2nd treatment and kept going up and down as low as 44. Last CBC was 61. I just dunno! I haven't had any treatment since then. My doc told me that he expected 3 months out of the Rituxan but I've heard 6 to 9 months, again....I dunno! Let us know how it goes for you.

Hairball, how high did your platelets go the first time you had Rituxan? I've heard and read that if you get a 'complete response' from Rituxan - normal counts 140 or higher - you are likely to have a longer remission and more likely to benefit from retreatments.

My first time with Rituxan lasted 9 months and my counts were normal for most of that time. I retreated, and only had two infusions due to a severe reaction, and I've had 28 months of remission so far and my counts have been mostly around 200. They dipped one time to around 100 but climbed back up and stayed up. I can't have Rituxan again due to the severe reaction so I hope this lasts.
Erica

Hairball, how high did your platelets go the first time you had Rituxan? I've heard and read that if you get a 'complete response' from Rituxan - normal counts 140 or higher - you are likely to have a longer remission and more likely to benefit from retreatments.

My first time with Rituxan lasted 9 months and my counts were normal for most of that time. I retreated, and only had two infusions due to a severe reaction, and I've had 28 months of remission so far and my counts have been mostly around 200. They dipped one time to around 100 but climbed back up and stayed up. I can't have Rituxan again due to the severe reaction so I hope this lasts.
Erica

Does anyone know at what point they try Rituxam. I have a child who has had severe low counts for 4 months..not even a good response from terrible steriods. IVIG lasted a wk. Also, does anyone ever have WBC counts below the normal range??? Pls any help would be wonderful..I am so glad to have found this site. I have felt so alone!

Well It's really between you and your doctor. My doctor did five months of prednisone before we discussed other options. He suggested Rituxin, because of the long lasting effects in other patients he treats. Now it's expensive and my insurance company (Tricare) approved it. Mine cost around eight thousand dollars per transfusion times four transfusions. Now I've been in remission for 8 plus months now with counts up above 170. Now my WBC never really fell so I can't speak about that issue. Your really going to have to talk with your doctor about your options and treatments everyone here is a little different, but full of good information, suggestions, and support. take care Rodger

Rituxan is usually tried when you get to a point where the more common treatments fail, or you get tired of using them. I first tried Rituxan four or five years after my diagnosis. Rituxan was fairly new for ITP back then though, so it wasn't really much of an option at first. I did Prednisone every time my counts dropped prior to that (Win-Rho didn't work, didn't want IVIG), and there weren't many other treatments to try. I got to a point where I couldn't do Prednisone one more time....too mentally invasive on my work and home life.

Hey Sandi, just out of curiosity..what was the reason for not wanting to do IVIg? I'm actually surprised insurance covers it, given the very short lived benefit of it. I've been surprised to hear that Rituxan seems to have such long lasting effects in some people.

I knew the response was short lived, and didn't want to miss work for a treatment that would have been a waste of time. I could get a faster and more lasting response with Prednisone, even though I hated it. IVIG is a rescue treatment, and I could get that with steroids since I have a quick response.

I'm being lazy and just re-posting this:

My daughter Caitlin had the standard four doses of Rituxan one week apart in Sept.-Oct. 2002, after a year of ITP; she was 15 years old. IVIg and WinRho didn't do much for her, but Dex pulses took her to the low 100's; she dropped by about half each week til she'd get to retreatment levels of about 20-25K. But the Dex side effects got to be too much after about ten months, and we looked for something else. Going without treatment seemed pretty scary, because Caitlin's intro to ITP landed her in the hospital as a result of a menstrual cycle run amok; blood transfusions, surgery.. There weren't as many options then, and we really wanted her to keep her spleen. A second-opinion doc mentioned Rituxan, we mentioned it to her regular hemo--and a few weeks later, she started the infusions. She was not on any study, and our insurance covered it, no problems.

Caitlin says she felt like a guinea pig, and she was one of the earlier kids to receive it--there had been a few others, and that guided our hopes. No, it doesn't work for everyone, but when it does----! She received each infusion very slowly--took all day every time. No problems noted on doses one and two, but her lower leg bones felt achey after doses three and four. And she developed a mild case of pneumonia between doses two and three--it was going around at school. She was given antibiotics, and stayed on-schedule for her next dose. Her counts rose very early-she started below 33K, had 132K a week later, after receiving dose two. Was at 171K when she developed the pneumonia, at 136K a week later, and had dropped to 103K after dose four. That was Oct. 18; she hung around there for a month, but had risen to 225K by November 26, 2002---and has remained at about that level (her highest was 292K) on every CBC since that time, seven years, nine months ago!

Why has she responded so well? Wish we knew. While she did not continue on the dex pulses after starting Rituxan, she had had a pulse the month before. I'm sure it took the dex some time to get out of her system; there was likely only some residual level but--who knows? We offered them the option of a few extra vials of blood--they didn't think it would be helpful. She was released by the hemo after the four year check, I think. She's 23 now and knows what to watch for.

I have been posting from the beginning of her Rituxan remission, and read and print off everything I can find about it. Those who hit 100K usually get a year or more of remission; some folks who don't get the high counts do get a break from other treatments for a fairly long time. Other folks, it hardly seems to help at all. The other thing is, if you've had a splenectomy, the first few months after Rituxan should be an prudent exercise in germ avoidance. I've seen people of all ages report on their Rituxan experiences--it's worked only occasionally for young babies, so far as I can tell, but works for about half from pre-teen years and up. We are still waiting for more results on kids to be published, but there's a fair amount of research out there on Rituxan, if you look.

Rituxan has side effects that were rarely reported in 2002--namely PML and serum sickness. Don't know that knowing about about them would have changed our decision. Caitlin felt so vulnerable health-wise just when she was coming into her own; she was becoming a hypochondriac and was avidly plucking leg hair with tweezers. ITP affected her head greatly. It also limited her in the activities that had long been part of her life--horseback riding, Girl Scouting (they went white water rafting, rock-climbing). And she was due to start driving...and wanted to work with fanged creatures (wolves, primarily). We felt it would be great to give her a chance at a year without worries!

Of course, we are nothing but pleased, and sing the praises of Rituxan every chance we get--but it is a big decision. Still, if offered the chance I'd grab it NOW, before Obamacare hits! Because its use for ITP IS off-label, and it IS expensive and it doesn't work for everyone, I don't think you'll be seeing as much of it soon...

Good luck to each and every Rituxanite! To infinity and beyond with those platelets! Ann, Caitlin's (23) Mom

Ann, thanks alot..I didn't know that about Obamacare affecting its insurability. When will that kick in..anyone know?

kmcadams wrote:

Does anyone know at what point they try Rituxam. I have a child who has had severe low counts for 4 months..not even a good response from terrible steriods. IVIG lasted a wk. Also, does anyone ever have WBC counts below the normal range??? Pls any help would be wonderful..I am so glad to have found this site. I have felt so alone!

Have you considered natural treatments? IVIG failed for my son and prednisone made him bleed like a stuck pig after 4 days. From that point on we said "no more drugs." He was a zero for what seemed like a very long time (a month or so). We just did a homeopathic treatment on him and he's moving on up for the first time and looks and feels fantastic. Expecting it will take less then a week for full platelets.

Something you might want to consider. How old is your son?

EKLEIN: My count max'd at 139k and dropped from there. This would have predicted that this regimen would not have given me a complete resonse.....and that a re-treatment would probably not be successful.....and it wasn't. But there is no way to tell what the initial results would be until you've tried it. This sorta gets back to 'trial and evaluation'.

Hey PATTI, He is 12 We have gone to a homeopath and he was treated for a viral and bacterial infection but didn't change any thing. NOw we are headed to a really good naturopath and hoping to get somewhere. He has developed what appears to be allergies he has never had before. Itchy eyes, itchy skin. Every day. Do u think that when we suppressed his immune system with steroids that he could've developed allergies???

kmcadams wrote:

Hey PATTI, He is 12 We have gone to a homeopath and he was treated for a viral and bacterial infection but didn't change any thing. NOw we are headed to a really good naturopath and hoping to get somewhere. He has developed what appears to be allergies he has never had before. Itchy eyes, itchy skin. Every day. Do u think that when we suppressed his immune system with steroids that he could've developed allergies???

Absolutely. Did the homeopath you used ever treat ITP? I was also using a homeopath prior to my current one but she had never treated ITP. She also was only treating single issues (sounds like that's what your guy did). You son needs a constitutional remedy. Have you searched this website for info from April? She is now treating my son and with great success so far. You might look her up and email with her. She responded to me within a day. We've been under the care of an ND for several years and even with that (my son has had food allergies for years), we were not able to get any progress to the itp. It took the homeopathy to do it. I believe this is because naturopathy supports the body while the platelets are low. Homeopathy cures from the deepest parts of the body. Read April's story and go from there. And remember that as hard as it is to find a good doctor, it's that hard to find a good natural doctor as well. Maybe harder. If you can't find April's info email me and I'll give it to you.

My DS is 11 (just turned) so they're pretty close in age.

All the best,

patti

Hey Patti, I will see if I can find her. I think I read her story..was it long, about her daughter and she was in the midst of getting her ND? An amazing story..particularly about how it helped her daughter's ability to relate to the family and friends. Did yall just communicate this way and she gave you ideas? My homeopath was just treating singularly like u said. Precious man..but just not completely well rounded. Only did the muscle stim testing.