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Beyond frustrated with my dr and nplate and Itp

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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10 years 3 months ago #52849 by Kelirae24
Beyond frustrated with my dr and nplate and Itp was created by Kelirae24
I've had Itp for 13 years now since I was 17, my counts have gone as low as 0 I had my son last November and have been on nplate sustaining counts between 25-55 with the occasional drop to 5 or 7 because of infection. The last two months have been a pain I will get sick my platelets drop to 7 or like today 3 but I'm not sick right now but during this time I will get 2 shots of nplate in one week then the next week I will be anywhere from 117-190 so my shot will be skipped then the following week my platelets are back down. Can anybody help me out here? It has to be the skipping of the shot doing this correct? They also did a urine test where a trace of protein and a little blood was found and my platelets are at 3. I got another shot today and have to go back tomorrow

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 3 months ago #52850 by EmilyK
Replied by EmilyK on topic Beyond frustrated with my dr and nplate and Itp
Keli
I am not on NPlate, but many have said that the results might take a week or two to be seen so skipping a week might be the reason for the dips. Maybe they could do a lower dose on the weeks when your number is high?
Emily

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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10 years 3 months ago #52852 by mrsb04
Replied by mrsb04 on topic Beyond frustrated with my dr and nplate and Itp
Section 2.1 for dosing. This is from the manufacturer's website
pi.amgen.com/united_states/nplate/nplate_pi_hcp_english.pdf

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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10 years 3 months ago #52857 by midwest6708
Replied by midwest6708 on topic Beyond frustrated with my dr and nplate and Itp
I get your frustration, believe me.
Your main problem could well be that erratic nature of the dosing. Two shots in one week is never indicated; and now that the experts have ample experience with the drug, they've figured out that a dose should never be skipped. If the count is above 200 for two consecutive weeks, the dose should be slightly reduced; and if the count remains too high, it can be slowly tapered off. Big changes should not be made hastily.

I've been on NPlate for about 1 year now and am still having trouble getting stability. My dose was skipped three times. Each time, my count fell to around 2 within two weeks.
But I'm still taking a bit of prednisone, which could be contributing to the problem. Are you taking anything else besides NPlate?

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  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
More
10 years 3 months ago #52882 by Kelirae24
Replied by Kelirae24 on topic Beyond frustrated with my dr and nplate and Itp
No just nplate, I've been on it on and off for 5 years 4 years ago I had a stroke on nplate at 25 years old. My dr at the time was trying to maintain a normal count and something happened where my counts went over 500,000

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  • Kelirae24
  • Topic Author
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
More
10 years 2 months ago #53117 by Kelirae24
Replied by Kelirae24 on topic Beyond frustrated with my dr and nplate and Itp
No I'm only taking nplate nothing else works besides ivig for me

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