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Off Dexamethasone. On Dapsone. Count +200,000!

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15 years 9 months ago #2853 by Steen
Off Dexamethasone. On Dapsone. Count +200,000! was created by Steen
Have not updated since December when I was on 8mg Dexamethasone/day plus had just started 100 mg Dapsone/day.
Here is what happened: Tapered off the Dexa on a slow, but constant basis, totally stop March 25th. The last 2 months were just 1mg - 0.125mg. Dapsone kept steady at 100 mg/day, still taking this.
And the platelets!
December: Went up to 326,000
January: A single low of 150,000 and high of 327,000. Average 250,000
February: A single low of 187,000 and a single high of 342,000. Average 270,000
March/April: All tests between 217,000 - 267,000
Here is the opinion of 3 doctors:
English doctor: Do not believe in Dapsone. The ITP could have been acute. Can only tell when Dapsone tapered off.
Danish doctor: Dapsone may be working. Will taper me off when I am back in Denmark and see what happens.
Thai doctor:The ITP may have gone, but can come back with no warning (scary!).

Had a blood count today showing 250,000!
:)

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15 years 9 months ago #2888 by tortie
Replied by tortie on topic Re: Off Dexamethasone. On Dapsone. Count +200,000!
Great count I hope you get to keep them without the Dapsone, time will tell. Good luck.

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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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15 years 9 months ago #2891 by Sandi
Replied by Sandi on topic Re: Off Dexamethasone. On Dapsone. Count +200,000!
Great counts! I hate to say this, but they could all be right. Dapsone isn't known to work well all that often, so I'm not a big believer in it. However, I do know of one person that it did work for years ago.

ITP can always come back, even if it seems to be acute. It's not something that you need to worry about, but keep it in the back of your mind.

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Platelet Disorder Support Association

Platelet Disorder Support Association
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IMPORTANT!

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.