Does anyone have experience to stop Promacta? My 12 years old son was on Promacta for 6 months. He was on 75 mg and count was 415K. Then we lowered it to 50 mg for 12 weeks and count stay at 260K. So we lowered it again to 25 mg for another 4 weeks and count hold at 200K. Finally since 10 days ago, we decided to stop Promacta completely. Yesterday I start noticing small patches of petechiae on his shoulder and belly. So far there are no bruises and blood blisters in the mouth. I am sure counts are definitely coming down. We are not sure if we should observe for couple more days and wish this is just a transient drop for stopping Promacta or we should go back on Promacta. Hate this ITP. Every time you thought we maybe done and it just jump right back.
Probably best/easiest to just start skipping days when tapering down below 25mg. For example, take 25 every two of three days for at least a couple of weeks and check counts. To drop another step, take 25 every other day and check. Another step, take 25 once every three days. Then once every four days, etc.
I dunno but you might go back to 25 mg for a week to get counts up and then go to either two every three days, or, one every other day. Based on the earlier 200 count, one would expect a 100 count for one every other day.
Seems like I recall reading one person on here that was taking one pill every week or every month something like that. Just needed that one pill to keep counts up. Odd.
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