Rituxan/Dexamethasone treatment completed/results

My daughter did a 32 day treatment as follows and I note her counts. We were told that it takes about 8 weeks to see the true results so we need to wait till about 10/3.
atart:count at 39000. Get rituxan with dexamethasone for next 3 days.
after 1 week: count at 130000. Rituxan only
after 2 weeks: count at 48000. Get rituxan with dexa methasone for next 3 days.
after 3 weeks: count at 104000. get rituxan only
after 4 weeks: take dexamethasone for 4 days, then 3 days of prednisone.
after 5 weeks and 2 days: count at 34500.

This was disappointing - so now we go back in 3 weeks to see if the hoped for increase in count happens. Has anyone had this type of result? goal is long term, not short term.

I've read that it does bounce around a lot before it actually stabilizes, hopefully thats what's happening. We are thinking of trying Rituxan for my daughter she is 13 and has had ITP for almost a year. Did the infusions go smoothly for your daughter, how old is she? Her count when she started was pretty good was she on any meds then?
Thanks, mom of Emmy
current count 15k

My daughter was diagnosed at age 14 in 12/09. So your daughter aand mine seem similar. She had winro in 12/09 as we ended up in emergency with 15000 count. This worked until 5/10 when she went down to 11,000. Up until this point she stabalized in the 40 to 60,000 range. no other treatments/meds until 8/3/10 when she started the rituaxan/dex treatment. Her first day was the worst as within the first hour she got a case of hives and intense stomach pains. But she got more benadylr(spelling ?) and they slowed the iv. She slept thru the rest of the treatment ( 9 to 5). she was feeling ok when we left but was pale. The dexamethansone(dex) pills caused some sleeplessness where she got up about 1am for a couple of hours. So she took a nap the next day. The day after she stopped the dex pills she was achy for 2 days around her upper chest/lower face/back. but she didn't need tylenol for it. One of the other girls getting this treatment had same issues. The following three treatments went fine and each treatment went faster than the last - last day we finished at about 1pm (9-1). Any other questions pls let me know.

Thanks for the info. We just returned from Emmy's first infusion of Rituxan, it was long but went smoothly, she slept through most of it. She will have 3 more during the next 3 weeks, she is not taking and other meds with it. Emmy was at 8k when she started, we were not going to treat is she was in the 20's but she just kept getting lower. They really don't like to treat where we live, but Emmy is so active that we decided to give Rituxan a try. Hoping for good results for both of the girls.

Good luck. It's good to hear that it went well. We go back on 9/30 - hopefully she'll go up and not down. Will let you know - pls keep in touch.

Hi, just wondering how Emma is doing, Emmy just completed her 3rd dose of rituxan today. It went well but we found out that her platelets fell from 68k to 16k during the last week. I know that they can bounce around awhile but this still makes me discouraged. The first week she went from 8k to 68k and we had high hopes, I even let her go to soccer practice. How is Emma doing?
Thanks, Shauna

Hi - sorry I haven't responded yet. My daughter has had the following counts:
9/9 = 34000
9/28 =44000
10/4 = 36000 We went back this morning as her Dr is going on vacation and we wanted to be sure she was at on ok level. She had her period last week which accounts for the count going up a bit.

So her count has not increased with the treatment. I think there is only slight hope that it may go up. We go back on 10/26.

How is Emmy doing????

She just had her last infusion 3 days ago, her count before the last one was 71k (up from 16k the week before), trying not to get my hopes up. The infusions were pretty easy for her, she slept through them.

It's good that Emma's counts are safe, does she play sports or is she very active?
I don't want Emmy to go back to soccer until we know that her counts are going to stay up for a while her team plays to rough. The doctor said 100k to play.

Good news about Emmy so far. My daughter is not into team sports. She is doing ultimate fresbie now and plans to try badminton or fencing in school next quarter. I just wish this treatment would work. I suppose there is still a small chance it will. Her Dr said she seemed like the perfect candidate based on her history.

Our other option was to go into a trial with eltrombopag promacta (is this spelling right). We opted not to since it was taking a pill a day but she wouldn't have been able to have dairy within a 4 hour window of taking the pill. It sounds easy but she loves ice cream, yogurt, etc. But we may end up doing it mow at some point.

I just wish it would go away!!!!

I'll keep you updated and pls keep me updated on your daughter as well.

[Promacta] We opted not to since it was taking a pill a day but she wouldn't have been able to have dairy within a 4 hour window of taking the pill. It sounds easy but she loves ice cream, yogurt, etc. But we may end up doing it mow at some point.

I take my 3 Promacta pills (75mg dose) around 1:00am, then go back to sleep.
By the time I head for work at 5:30am, eating restrictions are a non-issue.
.

One week after Emmy's last rituxan treatment she is at 144k we are pleased but I just don't want to get my hopes up.
Hope all is well with Emma.
Shauna

Now two weeks after last Rituxan infusion Emmy is at 214K the highest she's been since all this started. I'm still afraid to get too excited, but we're hoping this will last awhile.
Shauna

That's fantastic! Sounds like a GOOD Rituxan result. (Allow yourself a little excitement)

yea! I agree with Sandi, enjoy it while it's here, believe it will stay!

That's great! Emmy's count is even higher than mine. Wishing us both continued high platelets.

Thanks everyone, I pray constantly that this lets her get back to life as it was before ITP, at least for a little while. She's playing soccer again and enjoying the high platelets,
Wishing you all the best!
Shauna

I am following up from 3 weeks ago when my daughter's count was 36000 on 10/4. She was back on 10/26 and it was up to 76,000. We were pleasantly surprised - maybe the treatment for her will be positive but was just delayed. We go back in a month - hopefully this was not just a one time occurrence.
My daughter does have her 15 yr old checkup tomorrow ( she is 15 today!) and the Dr said that she is not to have any shots ( even the flu shot) because this treatment affects the B cell count which will not go back up until probably Feb/Mar. Her treatment finished around 9/3.
I am curious to see what her count will be tomorrow at the pediatrician tomorrow - hoefully still in the 76,000 range.

Wow. sounds promising! Hoping it keeps going up for her. Emmy is still in the 200's. I'm not checking her this week. We are going to try to start cutting back. Just a little hard because of all the soccer she plays it makes me nervous that it will fall and I won't know.
Interesting views from the doctors on the flue shot. We were told to get it asap. Emmy has had a bit of a runny nose and cough since her last infusion 3 weeks ago, I'm assuming it's a side effect.
Wishing you lots of platelets!

We were back just before Christmas and my daughter's count was up to 98,000. We were told to go bak in two months. At the one month mark she got a few bruises and one nose bleed and we almost went to see the dr but then decided to wait once the bruises starting fading. Her period came at the fifth week mark and it was haevier than usual-this is the first time her period has been affected since she was diagnose in 12/09. Well we were back at the dr at the two month mark this past Thursday. Her count was down to 35000! Real bummer. She has not been sick. WE now have to go back in 10 days. Both the Dr and we were most disappointed.