Question for you all re Rituximab

Really unscientific question but.................

I've been trying tor read up on the treatment options that the consultant gave for Dougie. Today I read in some scientific paper that my niece sent me that there may be a correlation between a positive response to steroids and a positive response to Rituximab. As Dougie didn't have much of a response to steroids, this might indicate that it wouldn't be a good choice for him.

However, the paper wasn't definite, soooooooooooooo........ I thought I'd try my own bit of research. If you've had rituximab, please could you answer

a) had you previously tried steroids and what sort of a response did you have?
b) did the Rituximab work?
c) is your ITP secondary to another illness (the paper also suggested a correlation for this)


Thanks very much.

Ali

Adult with ITP here.

1. I have used steroids. My platelets go up slightly with predinose, (57k at 60mg pred) and platelets go down
as the dose of steroids go down.

2. Rituxan: 4.5 year remission

3. ITP is the ONLY thing I have.

Working on my 2nd round of Rituxan.

1)I used steroids for about two years. At first I got a decent response, safe but not normal counts, then less, with borderline safe counts.
2)Rituxamab worked great
c)yes secondary to lupus
Erica

Hey Ali - as I mentioned before, Danica had no response to the Rituximab.

Looking for info regarding it? google "Toronto Sick Kids" Click on Medications, and then on "R" and rituximab will pop up.

Michelle

Steriods did nothing at all for my counts. The first round of Rituxan worked for 7+ months but the 2nd round did nothing at all. I'm still not sure about ITP being secondary or not. Running some more tests this week.

Hey, Ali -

Of course, lots of factors contribute and everyone's ITP is different (you know all that!), but...

1. Brady received steroids when he was first diagnosed. He went from 2k to 60k but never went higher than that and dropped immediately when we tapered. I guess that was a partial response, but his doctor didn't really consider steroids to be a successful treatment for him.

2. Brady did not respond to Rituxan. But he received it when it was quite a new treatment. When we went in for his fourth infusion his counts hadn't budged at all and we decided (with doctor input) to not do the fourth infusion. Now we hear lots about people having delayed responses, so maybe we should have gone through with the four - who knows.

3. As far as we know, Brady has "just ITP."

Good luck with your decision and I hope Dougie has a great summer! We just returned from an amazing family vacation in the rainforest/jungle of Belize on Sunday night and Brady left this morning to visit my sister and nieces in California by himself. We are taking the summer off from ITP!! Well, almost - we checked Brady in mid-June and his count was holding steady at 62k, so we're figuring he's safe. I'll still be a basket case while he's gone, but at least I won't be worrying about bleeding, just my regular over-protective nuttiness!

I agree with Beth. I really don't think anything is a predictor one way or another because we are all so different. I also did all this research for splenectomy and I also found an article saying that poor response to IVIG may show poor response to splenectomy, but then again...that isn't necessarily true. (The article was old too.) Honestly, I don't think enough drs/patients are willing to wait a full 12 weeks of no response to see if there truly is a response. Part of it is because the patient is having bleeding episodes and really needs something else. (Caitlin is one of them.)

1. Steroids only worked a little for Caitlin. At 80 mg, her count went up to 40. We did short pulses. After the 3rd pulse, she had no response at all.
2. We don't think Caitlin responded to Rituximab, but it is very possible that she got a very delayed response. (Week 10 after last infusion, count was 10. Started Nplate that week and at week 11, her count was 410 so who knows!)
3. Her ITP is possibly secondary due to possible Lupus (positive ANA, elevated SED rate, neutropenia, positive dsDNA) and she is still on Plaquenil daily.

Hi, My daughter Emmy was diagnosed a month before her 12th birthday She is now 14. She did respond to steroids, at 40mg she went from 11k to 140k. She also responded to Rituximab. September 2010 she had 4 infusions and she has been in remission since, though it seems her numbers are starting to drop. Her highest count was 224k October 2010, she is now at 160k. She has not been officially diagnosed with anything else, they thought it was Lupus at first but Rheumy now doesn't think it is. Only indicator is ITP and low positive ANA.

Hi!
I am responding for my daughter, who was 14 when she developed ITP, and 15 when she received Rituxan:
a.) She had you previously tried IVIg and WinRho unsuccessfully, and was put on Dex pulses--which did work, took her counts to about 100-130K within a week of a pulse, declining by half each week until she was back at retreatment levels (20-30 K). She had pulses every 4-6 weeks for about 10 months before we had all had it with the side effects.
b.) The Rituximab has worked wonderfully-she has been in remission for 8 years, 9 months now, with counts in the normal range. Her most recent CBC was in March or April of this year.
c.) I truly hope her ITP is not secondary to anything! So far, so good, though my mom and sister both have MS.

I have seen that recently, some docs are administering steroids along with Rituxan. They think they've seen a pattern of better response that way. To infinity and beyond with those platelets! Ann, Caitlin's (24) Mom

Totally unresponsive to pred and WinRho and when the entire cycle of 20+ weeks with the taper and finally accepted spleenectomy which controlled my ITP. Relapse 10y later and again totally unresponsive to pred other than those fun side effects so this time we tried Rituxan and 9 weeks later my platelets jumped to 300ish and are holding now for almost 1y.

So no particular pattern there then!

Thanks for the replies People. I am still not sure what we will be doing. Hate making decisions where you are choosing the least worst option rather than the best one, and thats what this feels like.

Dougie has probably just had the worst couple of weeks yet in terms of ITP - absolutely covered in enormous bruises and petechaie, and he has had one really bad nosebleed and one mild one that lasted for two days last week. I am really hoping that he's now hit the bottom and will be ok again for a few weeks. School ends this week; at least we won't have to worry about PE lessons, although he will want to be out on his bike with his mates, so maybe we are just swopping worries! We have decided to ring the doctor next week though to check that we shouldn't be doing anything else as he is not due to see the haematologist until the end of September or the paediatrician until mid August.

Rubbish couple of weeks.....I am really hoping that things get better now! Thanks again for the replies.

Ali

Phoning the doctor may have been a bad idea...... He said that he wants to see him because of the nosebleeds, so unfortunately, it looks like Dougie and I will be on the train to Manchester again on Monday next week. He wanted to see him on Wednesday, but its Dougie's last day of school and he is desperate not to miss it.

We are going on holiday to Crete at the beginning of August, so hopefully he will be ok for that - I don't want to be worrying about nosebleeds and bruises because I speak zero greek. I am looking forward to a week of no rain - it hardly seems to have stopped recently!

Ali

Oh Ali - I am glad that you called your doctor. After reading about Dougie, I sure did not want him to have to wait until the end of September to see the hemo. He needs something done quickly -- even some IVIg to get him through the summer. Have you tried IVIg before? Perhaps he will get a good response??? Who knows? WinRho is even easier - it is so quick. (It did not work for Danica because she was the wrong blood type).

Keep us informed.

Danica continues to do well. Her count last week was 594. Seems like such a funny number after all the blood tests that showed results of 2, 5, 6 etc. We are loving this. It already seems like soooo looooong ago that we were doing IVIg every two weeks.

Michelle

Michelle,

You cannot know how THRILLED I am to hear about the 594 - and the English typically understate their emotions!

Ali :laugh: :laugh: :laugh:

Ali - that is so funny that Dougie would not miss his last day of school!! Danica was thrilled every time she got to miss school. (She gets pretty bored in school though - she is much quicker at her work than most of the class). She will now be going to the high school -- grade 8, so things will change for her -- hopeully she will be more challenged!!!
Can't wait to hear how Dougie's appointment goes.

Hey, I just realized this -- yesterday was Dougie's last day of school????? July 20???? When do they start again in the fall? Danica has been out of school since the end of June.

Autumn term - Beginning of September until just before christmas, with a week half term at the end of October

Christmas - 2 week holiday

Spring term - beginning of January to sometime in March (depends on when Easter is in most counties) with a week half term at the end of February

Easter - 2 week holiday

Summer Term - Roughly April (it depends on when the Easter holiday is) to about 20th July, with a week half term at the end of May. Some schools in our county have two weeks at the end of May and a week less in the summer, so they stop at the end of July.

Summer - usually 6 and half week holiday.

In England primary school is 5-11, so kids go to secondary/high school when they are in year 7. Dougie started at high school last September. You can leave after Year 11 which is when you do GCSEs, but most kids go on to 6th Form / colleges which are year 12 and 13. Scotland is different. Kids there do standard level exams in Year 10 and then Highers in years 11 and 12. Not sure about Wales.

Do you have a longer summer holiday? I think the kids would drive me mad if they were home any longer!!!!!

Ali

School starts just after the long weekend in September, then get 2 weeks off a Christmas. They get a week off in February, and about 10 days off a Easter.

School goes til the end of June, and then they are off all of July and August.

Now that she is in high school, she will have final exams in June, which start the middle of June. No other classes by then - just go in to write the exam, and then off for the rest of the day.

Kids here get a nice long summer holiday. It is nice if they have a summer job because they get a good two months to work and make some money.

My granddaughter Sara lives with us and has been diagnosed with itp for 16 months. (she is 15) she did not respond to steriods, her doctor still wanted to try Rituximab, she did not respond to that either, so she had to go through getting a pic line, trying to be careful with it, getting blisters from it, for nothing. Her itp is not secondary, we have had her tested for everything under the sun. IVIG works well with her, however, her doctor has her on 6mp right now because it's cheaper. (Insurance must be pushing him) Her platelets go down to anywhere from 2-8 every month, even when they go up to 197 after treatment. We have done accupuncture which does help raise them temporarily.