Just wanted to post an update of my problems, since I have been worried about trying Rituxan.  Here are my platelet counts over the past month: June 11 - 11, June 15 - 155, June 25 - 807, June 29 - 725.  On June 25, the doctor suggested that I go ahead with Rituxan, mostly to get me off steroids.  I had my first dose of Rituxan Friday (June 29), in which everything seems to have gone okay (no problems yet).  I am also up for a dose of Cytoxan in 2 weeks, but not sure why.  I will ask this Friday when I go back for the second dose.

 

Thanks for all the responses and information about Rituxan and other possible drugs to try.

 

laura

lisa heisterman <lmshoenfelt@yahoo.com> wrote:

Laura,

My 6 year old daughter was put on Rituxan when her platelets were under 10,000 and her reds and whites were fine. Some people do see it work, but we did not. She ended up starting 6mp, which is an oral chemo with very minimal side effects. She was on it for 9 months and her counts are normal. She had normal counts after only 2 weeks of the 6mp. She has been off of it for about 3 months and it still doing good. 6mp is not a traditional medication for Evan's or ITP. I found a doctor in Boston that was suing it and convinced our doctor to try it. You may  want to ask your doctor about it. We are very thankful that we tried it. Good luck. Lisa(madison's mom)

"Laura (Crosby) Phillips" <usmlaura@yahoo.com> wrote:

I have a quick question.  For those of you who don't remember, I was in remission for almost 20 years, got pregnant (twice) and have had problems ever since (December 2006 was when everything started dropping).  I'm being monitored by my hemo, and they are pushing for me to try Rituxan. However, it is only my platelets that are low and not my RBC/hemoglobin, though those have been low since I was first diagnosed with Evan's/ITP/AIHA.  I'm currently only prednisone, had IVIG in March - which doesn't seem to have worked (this time - worked 20 yrs ago), and curious about Rituxan, since the internet info seems to scare me half to death with their statistics.  I have also investigated the clinical trials of Elmbopag and ANG 31(??), but it seems that you have to be at least 6 mons postpartum (after July) and have continuous platelet counts of 50 or less (mine fluctuate every 2 weeks, and I've had a range of 4 to 477 over the past 3 months). 

 

I guess my question is, is Rituxan helping with platelet counts, even when RBC/hemoglobin is considered "normal"?

 

thanks,

laura

Debra Adamo <sdkkadamo@yahoo.com> wrote:

Hi,

 

I underwent Rituxan infusions 1 1/2 years ago and have maintained stable rbc counts since. However, I was also on Imuran and a low dose at prednisone at the time; so my doctors aren't certain which treatment has worked.  I believe the Rituxan was effective 3 months after the infusions.

 

I was fortunate and didn't have any reactions to the infusions.  I mostly slept during the infusions because they do give you benadryl.  Let your son know the initial treatment took about 8 hrs because they do it real slow to make certain you don't have a reaction.  But the 3 remaining infusions were only about 4 hours which I mainly slept through.  He should also know I felt great after the infusions.  I was able to go about my business as usual once the Benadryl wore off.  I hope it is successful for him. 

 

God Bless

 

Debbie (46 w/Evans)

jmdjbw <wechslerbrooks@mindspring.com> wrote:

Hi,
My teenage son is being encouraged to do a round of Rituxan. We're
curious to now how long the benefits tend to last for most folks (I
know it doesn't work for everyone). I'd like to be able to reassure
him it's worth the long IVs!

Until now, for the two years he's had Evans, he's been using
vincristine, neupogen, occasional steroids and at first, IVIG.

thanks
dw

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