TOPIC:

Hi everyone
We were to she Brianna's hemo doc on friday. she has been going on a count of 2 for months. So he said he wanted to try her on rituxan. If your child has tried it how was it. side effects how long did it work or not work just wondering. we have done ivig she has all the side effects but doesn't work for her any more.
thanks
Dawn

Dougie had rituximab in January 2013. It was an easy treatment, although the steroids they gave him to stop reactions to the rituximab made him very tired. Bit of a nuisance going every week. It didn't seem to work much. I still think it was worth a shot.

i think it depends on the person. i am an adult but had terrible side effects to the rituxin. chemo like effects, and an allergic reaction at the first dose. but in the end, it put my platelets above 200K for 2 years before they dropped again this past summer. so, i went through hell but got 2 years of no treatments out of it. some people i know had no effects at all. and for some people it doesn't work at all. i think it just depends on the person.

i also went gluten free during that initial time. not sure if you have considered diet changes either. they say less gluten and dairy helps reduce the body's inflammatory responses.

My 11 year old daughter was diagnosed in January of this year. She has not had counts above 7 since May she lives between 1 and 3). She suffered a broken arm 4 months before diagnosis and in an attempt to get her platelets to a level that the hematologist felt comfortable approving surgical removal of the pins in her arm she had multiple doses of IVIg; oral prednisone(which never bumps her count); one dose of Win-Rho (which did absolutely nothing also) and four months of Dapsone (no results here either). They wanted to try 4 doses of Rituxin but I was encouraged to avoid giving it to her as it is a chemo agent and there can be some potential long term side effects. It was worded this way "I see many kids with ITP as tough as your daughter's and they are well past a year and still holding off on Rituxin". We chose not to give rituxin...she had the pins out at the end of April with no complications. She has had No major bleeding episodes. May be forced to revisit this question after the first of the year but I personally am still very reluctant to give it to her.

Hi -- I understand your reluctance, but my 15 yo daughter has now had it twice. She got 8 months the first time and 10 months the second time. (First time she took it almost exactly the same time as Ali's son, though on opposite sides of the pond). It was a godsend for us. No ill effects (that we can see) and she got her life back. Able to forget about ITP. Spent part of last summer in Costa Rica doing a service project, visiting a remote village, and doing a half mile zip line. Life changing and all brought to her life compliments of Rituxan. We struggled mightily with the decision to give it to her -- she had reactions to both IVig and AntiD that landed her back in the hospital -- but I am so grateful we took the plunge. She was able to just be a kid again for a while.

It did not, however, give her permanent remission -- and we are back again in the single digits. With some concern, we are going to have a 3rd go at Rituxan in a month or so. My daughter has worked it out with her doctor to actually try and time it so she can have a summer out of the country again.

We are forever grateful for the reprieve Rituxan gave our daughter. I know it's a big leap. We went through a long discernment process and then, one day, we just knew we were ready. Good luck to you, whatever you decide. xoxo

My kidneys shut down with rituxan. (I'm writing for my mom, she forgot her account information.) Anyway, they said it was supposed to work better than the ivig, and I might get some chills. The chills didn't hit until the medicine was over, and I was starting my long flush. Then on the way home, I started to get a migraine (no biggy for me, I have chronic migraines) and nauseous. When I got home,(the center was two hours away)my temperature started to rise. It got up to 103.4 and then my kidneys shut down. It's a rare side effect for your kidneys to shut down, but you should always be careful when giving your child a new medicine. And ask your child how they feel about it.

so 3 months ago brianna stated rituxan. after the frist wk counts went to 11. then after the second one they went back down to 2 and have been there every since. now her docs are wanting to take out her spleen. i feel like this is a very bad dream and i just need to wake up

Dawn - there are other options. If one treatment doesn't work, there are others that probably will. I just posted a good article about N-Plate and children; that would be a good option to suggest to the doctors. I'd save the splenectomy for a last resort as it is probably not necessary.

dawn1979 wrote:

so 3 months ago brianna stated rituxan. after the frist wk counts went to 11. then after the second one they went back down to 2 and have been there every since. now her docs are wanting to take out her spleen. i feel like this is a very bad dream and i just need to wake up

Hang in there. We parents here in PDSA know how you feel. I hope things get better for you.

Hi Dawn -- so sorry to hear this news, but want to say I agree with Sandi -- there are other options. Mia is now doing N'Plate and having success. I know that some people/kids are not responsive, but maybe you will have luck with NPlate. It's really straightforward in terms of side effects (i.e. none that we can tell!) , and our insurer/hematologist have given permission for us to now get the weekly injections at home. It keeps her platelets in a safe zone. I know other kids from our hospital also on NPlate -- maybe your doctor is wiling to try it??

Sending lots of love and prayers. Firkins