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n-plate

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11 years 10 months ago #40642 by margec
n-plate was created by margec
I have been on N-Plate for 18 months. I started out with a shot every week for a few months and then have been on a shot every 2 weeks for about a year. My platelets would stay between 70-150 most of the time but in the last month they have dropped dramatically to 47,000. I can't figure out why...does it stop working after a while, is it something different I am eating or doing? I am also very tired most of the time. My doctor doesn't really give me any answers and I am really frustrated because I thought I finally found something that works and didn't have to think about it all the time! Did anyone else have this experience or know what went wrong?

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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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11 years 10 months ago #40643 by Sandi
Replied by Sandi on topic n-plate
Marg:

When a person is on N-Plate, counts are supposed to be maintained around 50k because of the risk of blood clots. 47k is actually exactly where it should be. Seems to me that it's still working.

I wouldn't worry about the drop; that can happen and it doesn't mean that it stopped working. If you would continue to see a downward trend and it would hit a count below the safe range of 20k, then you might need to look at a dose adjustment.

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11 years 10 months ago #40644 by margec
Replied by margec on topic n-plate
Thanks Sandi! Since my counts were always so much higher I thought this was bad. I also take the highest dose (10) and am so afraid that they will go down lower. I have no symptoms except tiredness. The only thing my doctor could change is the frequency (once a week)! Thanks for the encouragement though. I hate to think about taking prednisone again or the IVIG I was doing every 6 weeks! UGH!

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11 years 10 months ago #40645 by Ann
Replied by Ann on topic n-plate
My experience with Nplate is that it does go up and down but it is the general trend that is more important. Give it a while and see what happens.

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11 years 10 months ago #40646 by Ann
Replied by Ann on topic n-plate
Why does your doctor change the frequency rather than the dose? That is not the norm. What happens when you take it weekly?

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11 years 10 months ago #40650 by margec
Replied by margec on topic n-plate
My doctor hasn't changed anything yet, but the nurse said maybe he would change the frequency because I am already at the top dose. I have a feeling if it's at 47k when I go in 2 weeks, he might not do anything. I'm just nervous about it and think about it too much!

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11 years 10 months ago #40651 by Christine
Replied by Christine on topic n-plate
Your story could have been mine. 18mths Nplate and then the drop. I was in a state for some days/weeks until I gave myself a reality check - at least it wasn't below 20K, and I had a minor infection which may have been responsible. A blood count a few weeks later showed that it was back to "normal" - what ever that is!!! :)

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