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Platelet Counts in the MILLIONS while on Nplate

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10 years 9 months ago - 10 years 9 months ago #47759 by goaliegirl51
I have been on Nplate for 6 months. The past month my counts have been in the millions. We even got as low as 2 micrograms/kilograms. The last time my doctor witheld a dose I dropped 800,000 platelets (1 million to 200,000) in just one week. WTF is wrong with me????

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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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10 years 9 months ago #47761 by Sandi
I'd guess your dose is too high or maybe you don't need it any more. You should be trying to maintain a count around 50k. I wouldn't be comfortable with counts in the millions.

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10 years 9 months ago #47771 by Robert1959
Replied by Robert1959 on topic Platelet Counts in the MILLIONS while on Nplate
The same thing happened to me.
I had a count in the high 300's and was given a small dose of NPlate which took me to 1,036 the next week. Needless to say I didn't have a dose that week however my count went up further to 1,084 the following week and I was told to take 1/4 of an aspirin tablet to reduce the risk of clotting. The week after that I dropped 700 down to the high 300's again. Putting aside the side effects from the various medications (mainly fatigue and headaches) and the symptoms (nose bleeds, mouth ulcers, bruising, etc which disappeared once I got above 20), I didn't feel any different at 1,000 than I did at 0 which was very strange. Each week when I went for my blood test, it was a guessing game as to what my count would be and I me ended up graphing the dose level against the blood count in an attempt to predict the result. One thing that was evident in my case was that the full effect of a dose would be felt 2 weeks after it was given and so my count would often rise even though I had not received a dose the week before.
Eventually I stabilised not just above 50, but at a normal level and into remission however it did take 5 months.

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10 years 9 months ago #48118 by markhudson
Replied by markhudson on topic Platelet Counts in the MILLIONS while on Nplate
Hey GoalieGirl,

I had a similar situation with N-Plate where my count went into the millions and had a dose withheld and went from 1,200,000 to 70,000. There is nothing wrong with you and maybe as Sandi says you maybe don't need it any more but finding the right dose is as much art as science. But I would say a count of 200,000 sits inside the normal range for non ITP patients so if thats where your counts stay off the drug then maybe you don't need it. Of course that's upto your doctor but counts in the millions can be dangerous in the long term too :(

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