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Dex

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14 years 7 months ago #18018 by tgurin12
Dex was created by tgurin12
I am having a very hard time getting my platelets up. Pred failed. WinRho went up, then dropped to 6K. On Dex now, the 10 tablets for 4 days. After day one I only saw a 6K increase and I am still having a bloody nose on and off. Anyone have such a small jump after first day? Also receive first shot of N-Plate on Tuesday in hope that platelets will eventually stabilize. Getting really scared here. Have had ITP for 7 years and never had such a hard time keeping the platelets.

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14 years 7 months ago - 14 years 7 months ago #18025 by Ann
Replied by Ann on topic Re: Dex
I did the dex four day pulse once but didn't have my count tested until afterwards. I don't recall anyone else here having a test after the first day either so you may not get a response to that question. Looking at my records I see that I was tested 4 days after the last dose and had a count of 202 (after a starting count of 5). One week later my count crashed down to 1.

Presumably you'll get a count done before the Nplate on Tuesday so that if your count is high they will postpone it?

Nplate has worked very well for me and after a bit of time getting stabilised on it, I've had to reduce the dose back right down. Don't get discouraged, Nplate works for something like 85% of people so you've a good chance of success.

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14 years 7 months ago #18028 by tgurin12
Replied by tgurin12 on topic Re: Dex
Thanks for the reply. After 2 days, only up to 22K. Getting very Frustrated, but will try to hang in there.

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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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14 years 7 months ago #18033 by Sandi
Replied by Sandi on topic Re: Dex
Are you getting tested every day?

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14 years 7 months ago #18039 by tgurin12
Replied by tgurin12 on topic Re: Dex
Yes. I tend to crash very quickly. (I can go from 200,000 to 6K overnight) Of course, we have the three day weekend and I am due for my second N-Plate on Tuesday.

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14 years 7 months ago #18052 by Ann
Replied by Ann on topic Re: Dex
How will they know which is working.. the dex or the Nplate?

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14 years 7 months ago #18078 by SamIAm
Replied by SamIAm on topic Re: Dex
yeah, I don't really recommend doing more than one treatment at a time- they don't know which will be causing what results.

I hated NPlate, so I tried Dexamethasone without really understanding how horrible the side effects are. I am currently trying Imuran with the Dex as an emergency backup.

I have to stress the need for patience in these situations. As someone who experiences severely low counts (2000 is normal for me) on a regular basis, I've learned to not panic. The steroids DO take a few days, but once they take effect your count will soar! And then plummet of course, but that's just what we deal with. It may take a while to discover the best treatment for you.

In th meantime, may I suggest carrying a first aid kit? I alway feel a little more secure when I have mine.

Good luck! Xo

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14 years 7 months ago #18140 by lili
Replied by lili on topic Re: Dex
Those counts don't sound unreasonable to me. I have a good response to prednisone and that's the sort of counts I'd expect after a day or two. For example, when I was diagnosed my counts were 3K and they stuck me on 75 mg of prednisone. The next day they were 13 and the day after that they were 32. You have to give the drug some time to work and your body some time to make platelets. I would expect Dexamethasone to work similarly to pred because it's another steroid.

Hopefully the dex will get your platelets up quickly and the nplate will keep them up long term. It does sound like the steroid is working.

Lily

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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.