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Is this normal when staring Promacta?

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8 years 2 months ago #61833 by penlyn63
Is this normal when staring Promacta? was created by penlyn63
Started at a platelet count of 16
First week- 50 mg a day- count goes to 194, had horrible headaches and joint pain
Second week- reduced to 25 mg a day, count goes to 156
Third week - reduced to 25 mg every third day, count goes to 100
All still well
4th week , 25 mg every third day, count goes to 29 (?)
5th week, 25 mg every other day, count goes to 2. (?)
Was sent to outpatient for a platelet transfusion or they wouldn't let me leave the campus (even though I have the Promacta at home and could clearly increase the dosage)
Had 2 units of platelets and Solu-Medrol. Tested the next morning (today) at 139. Thought it would be higher.

I'm hoping we just need to up the Promacta. I'm now back to 25 per day. But from 100 to 29 to 2? Yikes! I can't test again until Tuesday. This whole damn disease makes no sense. I've already done prednisone for almost 2 years, and Rituxan. Promacta has to work! :-)

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 2 months ago #61834 by Hal9000
Replied by Hal9000 on topic Is this normal when staring Promacta?
A two? Ouch!
Yes. As a general rule those with a row 1 steroid and IVIG response in my table should avoid skipping days with Promacta. It seems as though the immune system steps up its destruction of platelets when a day, or days, are skipped. My response is row 3 and can skip one day without issue. Two days is more of a problem but does not result in a crash.
The following user(s) said Thank You: penlyn63

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8 years 2 months ago #61918 by penlyn63
Replied by penlyn63 on topic Is this normal when staring Promacta?
Thanks Hal! After a week at 25 every day, I tested at 135 yesterday. will keep it there this week and test again next Tuesday. Oy!

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 2 months ago #61922 by Hal9000
Replied by Hal9000 on topic Is this normal when staring Promacta?
Glad to be of help. From what I've seen of others, a 25/12.5 split should work with counts as high as yours with 25mg. But a 25/12.5/12.5 split may not work as well as straight 12.5 because of this 'stability' issue that you've just experienced.

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