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Timothy, rituximab and Nplate

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13 years 1 week ago #27968 by lucidawn
Timothy, rituximab and Nplate was created by lucidawn
Tim got another round of rituximab with the nplate on top. He is now responding again to the Nplate (200k last week). The hemonc said, "I guess you were right." LOL...ya think?

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
The following user(s) said Thank You: lagreelarry
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13 years 1 week ago #27981 by Dean
Replied by Dean on topic Timothy, rituximab and Nplate
Why are they treating with both Rituxan and Nplate at the same time? Usually one waits to see if one treatment works or not, before trying another.
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13 years 1 week ago #28056 by alisonp
Replied by alisonp on topic Timothy, rituximab and Nplate
Hi,

I was wondering how Tim was doing. Its good to hear that the dr finally listened to you - I remember that working almost the same the first time Tim tried rituximab. Hope it continues working for a while :)
Ali
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13 years 1 week ago #28062 by lucidawn
Replied by lucidawn on topic Timothy, rituximab and Nplate
Dean,
Tim is refractory to all other treatments. The only thing that brings him up is the combination of rituximab and nplate. Otherwise, either one by itself gives him extremely low counts and bleeds (like 1k or less. I reported this correlation previously and they didnt' believe me.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
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13 years 5 days ago #28150 by Dean
Replied by Dean on topic Timothy, rituximab and Nplate
OK. I was wondering the need for that. Good to hear the Dr listened to you!!!
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13 years 3 days ago #28205 by meador
Replied by meador on topic Timothy, rituximab and Nplate
This is the same combo my son is now on. We have been in the hospital for a week so far. He has had his 3rd Nplate inject & was just started on the rituximab. How long did it take for you guys to see a response?
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13 years 3 days ago #28206 by lucidawn
Replied by lucidawn on topic Timothy, rituximab and Nplate
Meador,
He got a slow climb the first few weeks, then after that he has maintained at about 200k with the combo. I think they are very happy to see him come up. They are about to transition him to adult care since he is 19 now will be 20 in June. They just want to keep an eye on him a little longer before they send him to an adult hemonc.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
The following user(s) said Thank You: meador
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13 years 2 days ago #28222 by meador
Replied by meador on topic Timothy, rituximab and Nplate
Nolan's count is now 1k, 2 days now. Has had his 3rd dose of Nplate on this past Mon & started on Rituximab last Sun. Would you think we should have seen some sort of response by now? They are putting in a picc line in the morning. Thanks so much for your input.
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13 years 2 days ago #28224 by Ann
Replied by Ann on topic Timothy, rituximab and Nplate
For adults there are 10 doses of Nplate. They start with the lowest dose and higher it each week until they get a sustained response. Whether it's the same for children I wouldn't know. The doctor should be able to explain to you what they are doing with regard to dosing.
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13 years 2 days ago #28227 by lucidawn
Replied by lucidawn on topic Timothy, rituximab and Nplate
Tim has been on NPlate for three years. He only responds in tandem with rituximab. He is 19.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...
  • pegstirling
  • Offline
  • My son, Aaron, dx at age 5 (5/2001), though he was in remission for 5 years after a vaccine, came out of remission and lives at 3k. Did 5 years of treatment with but then stopped working, back at 3k. He is basically non responsive to all regular treatmen
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12 years 10 months ago #29397 by pegstirling
Replied by pegstirling on topic Timothy, rituximab and Nplate
Hi.. Question so he has taken NPlate for 3 years straight and how often does he do the Rituximab? Aaron has been at 1K for 3 weeks and we had a little episode of bleeding that freaked me a little and I put him on the prednisone. Won't do WinRho and IVIG isn't a choice either. He has been on prednisone (120 mg a day) and after 5 days he only climbed to 8K ugh. Aaron does well with the low numbers, other than getting tired easily and some days being unfocused, but I need to know if something will work in an emergency or events. He did Rituxan when he was 8 in a Boston Childrens Hospital study but no response. SInce older kids and adults respond better, opted to try. This round of ITP is a totally different beast than last time. We are scheduled for his first Rituxan treatment on Friday. Glad to hear that Tim is doing well. Hard to believe how quickly they grow up. Man, I remember back in the day and how much this site and people's attitudes about ITP and doctors have changed so drastically in basically a relatively short time. Thanks. Peg
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