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Optimistic for Rituximab

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9 years 8 months ago #43914 by athos45
Optimistic for Rituximab was created by athos45
Tonio is now 9 years old and will undergo his first Rituximab treatment. Wish us luck. We actually got our meds from India. Here are some pictures...
s19.photobucket.com/user/athos45/media/DSC_0994_zps0ywoderr.jpg.html

Father of Tonio, 8 yrs old w Chronic ITP
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9 years 8 months ago #44016 by athos45
Replied by athos45 on topic Optimistic for Rituximab
Done with first dose of 4. 100 mg today and same for the next 3 weeks
Mild reactions.

Father of Tonio, 8 yrs old w Chronic ITP

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9 years 7 months ago #44512 by athos45
Replied by athos45 on topic Optimistic for Rituximab
4.5 weeks after the first infusion of 100 mgs, still nothing. Crossing my fingers and praying something happens.

Father of Tonio, 8 yrs old w Chronic ITP

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 7 months ago #44513 by Sandi
Replied by Sandi on topic Optimistic for Rituximab
I hope you see results soon too. Let us know.

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9 years 7 months ago - 9 years 7 months ago #44827 by athos45
Replied by athos45 on topic Optimistic for Rituximab
Still nothing. Same old bruising and nose bleeds... How long should i wait to say the treatment failed?

Father of Tonio, 8 yrs old w Chronic ITP

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9 years 7 months ago #44829 by MatthewR
Replied by MatthewR on topic Optimistic for Rituximab
I think part of what you should consider in answering that is...

1) Where are the counts currently?
2) How comfortable are you with those counts and symptoms while being in a 'wait and see' mode with the Rituximab?
3) What's the next treatment likely going to be?

For me, I had about a five week gap from my last Rituximab treatment and when I started NPlate. My counts have been in single digits that entire time - but without a lot of the normal symptoms that I've had before. I've gotten fairly comfortable with being in single digits - but with that being said, I also didn't want to wait long to see if the Rituximab kicked in before starting NPlate. In fact, it probably wouldn't have been five weeks for me had it not been for the process of switching to a new hematologist and waiting for my insurance to approve the NPlate. I know there's still an outside chance the Rituximab will kick in even though I'm now on NPlate, but my hemo is aware of that and we talked about what that might look like and how to manage it if it happens.

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9 years 7 months ago #44830 by Rob16
Replied by Rob16 on topic Optimistic for Rituximab
Ellen (my wife) is just starting to see some results after first treatment Aug 11 (12 weeks?) This is not unusual, so it is much too early for you to give up, unless children respond differently than adults.

In a group of studies on children, the median response time was three weeks, but the range was up to 17 weeks.

Time to response was reported in 8 studies [17], [18], [21], [23], [25], [26], [27], [30] (97 patients with response), ranging from 0.3 to 17.0 weeks [23]

www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0036698#pone-0036698-g004
Rituximab for Children with Immune Thrombocytopenia: A Systematic Review
Yi Liang, Lingli Zhang mail, Ju Gao, Die Hu, Yuan Ai
Note: this article is open and free in its entirety, not just the abstract.

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9 years 7 months ago #44877 by ananta
Replied by ananta on topic Optimistic for Rituximab
athos45 was it cheaper from India? Why did you get it from India?
Hope it works for your son.

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9 years 6 months ago #45045 by athos45
Replied by athos45 on topic Optimistic for Rituximab
Yes Ananta, it is significantly cheaper in India. And India is much closer to the Philippines. Luckily, we had a friend going to India, a trustworthy Pharmacy, perfect timing, and good packaging to keep the meds at 3-8 degrees celsius.

And here we are, 8 weeks after the 1st treatment and we have a count of 84 .

It is a good day. Glory to God. :)

Father of Tonio, 8 yrs old w Chronic ITP

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9 years 6 months ago #45209 by ananta
Replied by ananta on topic Optimistic for Rituximab
Good numbers althos45! :)

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9 years 5 months ago #45538 by athos45
Replied by athos45 on topic Optimistic for Rituximab
Haven't checked my sons counts but they must be low because of nosebleeding and some bruising. WHat is the longest known time before the rituximab takes effect? Doc said it could take some time.

Father of Tonio, 8 yrs old w Chronic ITP

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9 years 5 months ago #45539 by Rob16
Replied by Rob16 on topic Optimistic for Rituximab
You might have missed my earlier comment: in a combined group of studies on rituximab for children with primary ITP with 97 responders, the longest time to response was 17 weeks. Your son is at about 11 weeks?
The link is in my previous comment.

In adults there has been time to response reported as long as 6 months. I have posted the link before, but I don't remember where.
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8 years 9 months ago #51034 by athos45
Replied by athos45 on topic Optimistic for Rituximab
BUMP.

First treatment no results. We are on our second cycle.

Fifth and last treatment of 100mg Rituximab tomorrow. Prayers accepted for my 10 year old son.

Father of Tonio, 8 yrs old w Chronic ITP

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 9 months ago #51036 by Sandi
Replied by Sandi on topic Optimistic for Rituximab
Good luck. Did he have any response at all? Usually if it doesn't work the first time, it won't work the second time.

Have you thought about the TPO's (N-Plate or Promacta)?

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8 years 9 months ago #51057 by athos45
Replied by athos45 on topic Optimistic for Rituximab

Sandi wrote: Good luck. Did he have any response at all? Usually if it doesn't work the first time, it won't work the second time.

Have you thought about the TPO's (N-Plate or Promacta)?

Hi Sandi, thanks for your reply.
Yes, but minimal. He went up to the 80's in that period. Nosebleeding was less, but perhaps maybe because an EENT helped us with this problem.

I'm reading most Rituximab treatments come with Dexamethasone. Our Hemo doesn't give... Should I inform her? Only Hydrocortisone and benadryl is given i think to ease the reactions. Should this matter? It has been the 5th week since initial transfusion... still no response nor remission.

PS. N-Plate will cost me 3500 USD a month. Without medical insurance, I don't think my finances could handle this expense.

Father of Tonio, 8 yrs old w Chronic ITP

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8 years 8 months ago #51359 by gertruida
Replied by gertruida on topic Optimistic for Rituximab
I wonder if somebody could help me with info, I want to know if Rituximab has any effect on the fertility of a girl, my daughter is 12 years old

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 8 months ago #51366 by Sandi
Replied by Sandi on topic Optimistic for Rituximab
Athos:

Rituxan and Dex are not always given together. Recent studies have shown that the results are better with the combination, but many doctors are not doing it that way.

Gertruida:

As far as I know, Rituxan does not cause infertility. I would question the wisdom of using it on a two year old though. It is a harsh medication with potential long term side effects. Most of the time, children can get away with no treatment. If a child has to be treated, I would try the least toxic method possible.
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8 years 4 months ago #52979 by aubreyty
Replied by aubreyty on topic Optimistic for Rituximab
Hi Athos45,

Wanted to ask how your son is post Rituximab? Did he respond well and is on remission?

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