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Nplate

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8 years 11 months ago #58010 by MaryV
Nplate was created by MaryV
I have been on Nplate for about a year now. For the last month I have been having a headache that won't go away. I've had an MRI to rule out bleeding on the brain, since I also have leukemia, CLL. It says one side effect of the Nplate Is headaches. Has anyone else had this experience with this? I know it could be other things since I have other issues but just wondering. I also have a dr appt. coming up to further look into it. They also found white matter on my MRI, saying changes of this much should not be seen in my age. I'm 59.

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8 years 11 months ago #58017 by jayinchicago
Replied by jayinchicago on topic Nplate
I have been taking nplate for 2 months and I have not had any issues.

I was on 80mg pred and now out.
Pred was causing lot of issues including severe headache during withdrawal so even if nplate is causing mild headache I would not notice it.

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8 years 11 months ago #58021 by Rob16
Replied by Rob16 on topic Nplate
MaryV,

There are various forms of white matter changes, and various causes. One cause can be tiny strokes. You are asplenic and are using Nplate, both of which increase your risk of blood clots. Has your doctor been keeping your platelet count near 50k to minimize the risk of clotting?
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8 years 11 months ago #58028 by MaryV
Replied by MaryV on topic Nplate
Today I was at 175, so no they are not. I was given 1 mg. Today.

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8 years 11 months ago #58104 by poseymint
Replied by poseymint on topic Nplate
Very good point Rob. Many doctors it seems do not take the Nplate guidelines of 50K seriously. I've read so many stories on the forum of people with counts in the normal range- above 150K while on the TPO drugs. Amgen website quote (from memory) "80% of thrombotic events happen when platelet counts are above 100K."
That said, I'm also on Nplate and wake up with a headache approx one day per week. Its usually 5 days after my injection. I also have dry mouth on that day so I know its from Nplate. Its a mild headache, I drink some coffee and it goes right away. Hope that is helpful. Good luck! --I would certainly look into white matter issue and ask lots of questions.
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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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8 years 11 months ago #58107 by mrsb04
Replied by mrsb04 on topic Nplate
I've just been on uptodate .com which states 35% chance of a headache with N Plate
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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 11 months ago #58122 by Hal9000
Replied by Hal9000 on topic Nplate
posey, about your headache and possible micro brain blood clotting.

Doesn't it make sense that counts go up and then fall back down over the week with each NPlate shot? So the headache would be consistent with the higher/peak count, yes? If so, have you thought about taking a baby aspirin the night/day before you expect a mild headache the next day? Keep the blood a little thinner during the peak?

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