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Curious about when people have come off Promacta

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11 years 6 months ago #42613 by GhostRider
Curious about when people have come off Promacta was created by GhostRider
So I have currently been on 25mg of Promacta for about 3 months now. My count has not dropped below 100 during this time.

To begin with I was having a few side effects but they have stopped. Seems my body has gotten use to it.

Now all the literature I can find about Promacta suggests that if you count goes above 70 and is stable then you should be coming off them.

I am in no rush to come off them but was curious at what point the decision for other people to come off them was.

Funny enough it might be all academic since I have CVID and chances are at some point I will have start monthly IVIG this year but still curious :)

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11 years 6 months ago #42676 by poseymint
Replied by poseymint on topic Curious about when people have come off Promacta
There is a 12.5mg dosage I've heard- that might be a good next step down. Or take 25mg every other day would be an option.

When I've stopped Promacta abruptly my counts did not crash. They slowly went down. Once at 100K, I stopped taking Promacta and it took around 4-6wks for the counts to drift down below 20K.

Thats my experience- maybe your counts will stay up! let us know how it goes- good luck!

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Platelet Disorder Support Association

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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.