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NPlate efficacy

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7 years 4 months ago #63458 by penlyn63
NPlate efficacy was created by penlyn63
For those of you for whom NPlate is effective: how long did it take for it to stabilize you? And how quickly does an injection take effect?

I've been through prednisone for 18 months (stopped working,) Rituxan (didn't work,) and Promacta (50 mg didn't work, 75 worked but sent me over the top with side effects and super high counts.) So now we are trying NPlate.

My first injection I was still taking Promacta so my count was at 275 before the first shot. Second week I was at 260, so I got a microdose. Third week, yesterday, my count had dropped to 3. So I got my first full dose. I knew my number was low...had/have bruises all over and blood in my mucus. Just wondering how quickly it is actually supposed to work.

I always feel fine and am a distance runner, and I don't want to curtail all activity for too long. I have Promacta down to a science and could tell when I was dropping or rising. But not sure how NPlate works or how quickly.

Thanks!
  • 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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7 years 4 months ago - 6 years 6 months ago #63459 by mrsb04
Replied by mrsb04 on topic NPlate efficacy
My counts swung all over the place on Nplate, I would never say I was stable. I gave it up after a year with a count of 6.
I have found Promacta much more suitable, counts way less labile.
When you say 50mg didn’t work what sort of counts were you getting?
What side effects did you experience on the high dose?
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7 years 4 months ago #63461 by penlyn63
Replied by penlyn63 on topic NPlate efficacy
At 50 mg I dropped to 2 and couldn't get back up without increasing the dosage. (I started at about 65 and weekly worked my way down.) When we jumped to 75 mg I was in the 300's and had massively debilitating headaches, that kept me out of work. We started to experiment with a 75,75,50,75,75, 50 type of daily dosage but thought jumping to Nplate might work better for me. On Promacta I could tell when my count was below 50 because my headaches would go away! My body actually fells best when it is between 30 and 50, although I'm very lucky that other than the headaches, I really don't get side effects with any of these protocols. (Well, I gained 30 lbs on prednisone and will NEVER go back to that!)