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Questions- Confused need inputs 7 years 3 months ago #54859

  • Shubhreta@gmail.com
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Hello ,

Had some questions related to ongoing treatment for my daughter( diagnosed when she was 5 and now 7 years old)-

1.) She has been on Nplate for more than a year now and finally the dose has gone down to half of what she was getting and keeping the platelet count between 47k - 140k). The doctor is now suggesting if we would like to switch to Promacta as it is getting too much for the little girl getting her blood drawn every week and a poke every week. Confused weather we should switch or continue with Nplate?

2.) Doctor also hinted there might be other reason for ITP maybe Lupus? Though they are not sure? Asked to keep a watch. What are the symptoms of Lupus?
In the past she had blood in the urine (once ). Got the urine test done everything came out negative. At this time her counts were 331k.

- Complains of joint pains now and then? Mostly after she gets her Nplate injection

- In btw. used to complain about urge to urinate but did not used to actually do . ( in the night time) . Not complaining anymore though.

Really confused and would be looking forward to all your opinions.

Should be concerned that this is something other than ITP.

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Questions- Confused need inputs 7 years 3 months ago #54865

  • 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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I'm pretty sure that switching to Promacta would require weekly blood work too for a while. the dose will need to be adjusted according to her response and counts will have to be watched until she is stable, which could take a while. Some people have been able to give N-Plate injections at home, maybe you could look into that and since she is stable on that, maybe blood draws could be spaced farther apart.

As for Lupus, did she have any blood test results that could indicate that? ITP can sometimes be a symptom of Lupus but it is rare. I'd ask him why he thinks that...I don't see any reason to be concerned based on what you've said.
The following user(s) said Thank You: Shubhreta@gmail.com

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Questions- Confused need inputs 7 years 3 months ago #54867

  • Shubhreta@gmail.com
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Yes , though he did mention that Promacta can take time to make her counts stable as well. so till that time we have to keep doing blood work done. I did talk to him about spacing out but he said as it is a weekly thing with Nplate we have to get the blodd test done!

No, he has not asked to do any blood test for Lupus? I don't know on what basis he mentioned it. Need to keep checking with him. They confuse the already confused parents:).

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Questions- Confused need inputs 7 years 3 months ago #54874

  • 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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I don't know why he would mention Lupus. It's possible, but unless he knows something that you don't, there is no reason to suspect that right now. :)

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