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N Plate Taper

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7 years 8 months ago #62243 by PurdueRose
N Plate Taper was created by PurdueRose
What is the taper they generally use for N Plate? I am moving the shot to once every 3 weeks with no tests in between (unless I am skiing which will be every weekend). I wanted to wait until after the winter but my platelets have been consistently in the 200's for 3 months so apparently it is time.

I am on 1/2 the recommended dose every other week, could I at this point just stop the shots? That is what I really want to do at this point. If the shot is not doing anything (as my Hematologist thinks), I don't want to go through the stress of the taper.
  • 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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7 years 8 months ago #62244 by Sandi
Replied by Sandi on topic N Plate Taper
I don't think I'd just stop them...take it a bit slower. You don't want to end up back where you started.
The following user(s) said Thank You: PurdueRose
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7 years 8 months ago #62245 by PurdueRose
Replied by PurdueRose on topic N Plate Taper
You are right, but the taper is just so stressful!
  • 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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7 years 8 months ago #62247 by Sandi
Replied by Sandi on topic N Plate Taper
Can you tell me why? It seems like all you're doing is going for injections less and less. That's a good thing.
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7 years 8 months ago - 7 years 8 months ago #62249 by jayinchicago
Replied by jayinchicago on topic N Plate Taper
Iam on a formula based dosing for the last year and a half.
Take NPlate only under 40.
So after a shot, I take 3 week break. Get tested if above 40, then come every 2 weeks.
Under 40 take the 250mcg shot and go back to step1.
But my destruction and numbers are not very high BTW.
So last week I was 89 after 3 weeks and it might take some time to get down to 40.

You look like you are in partial remission.
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7 years 8 months ago - 7 years 8 months ago #62251 by poseymint
Replied by poseymint on topic N Plate Taper
I have been on Nplate every week for several years- I would love the stress of tapering off of it! haha you are very lucky- thats great! I agree with Sandi and Jay that you might be in partial remission and you should really taper Nplate and not risk crashing by quitting abruptly. Sounds like the doctor is speculating that Nplate is not working but doesn't know for certain. Tapering will be a safe way to find out for sure what Nplate is doing.
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7 years 8 months ago #62256 by momto3boys
Replied by momto3boys on topic N Plate Taper
I'm with poseymint, give me some tapering, PLEASE! I think we'd all like to be able to get off of our respective treatments and have great counts. That is wonderful news that you have hope of getting off of the medication. That said, the body tends not to be a fan of sudden changes, so you definitely don't want to stress out your system by just stopping abruptly. Hopefully you can taper off slowly and your counts will remain high. Good luck!
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7 years 8 months ago #62263 by PurdueRose
Replied by PurdueRose on topic N Plate Taper
I can't go less on the shots, we are spacing them out every 3 weeks. I just feel like it is the point I am either going to be fine or end up in the hospital regardless. They were not going to test me between shots but the weekends I ski they said they would, so maybe we can catch a low count before it becomes an issue. . .
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7 years 8 months ago #62264 by PurdueRose
Replied by PurdueRose on topic N Plate Taper
Yes but my numbers always seemed to respond then disappear. 381 to 18 in one week or 115 to 2 in 48 hours. though 3 mos of stability is pretty good. 3 weeks is a lot of time for my platelets to drop.
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7 years 8 months ago - 7 years 8 months ago #62265 by PurdueRose
Replied by PurdueRose on topic N Plate Taper
Thank you, I suppose I will do the every 3 weeks for at least 1-2 cycles. that may be the safer way to go!
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7 years 8 months ago #62266 by PurdueRose
Replied by PurdueRose on topic N Plate Taper
I hope someday soon you are able to taper too!
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