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TOPIC: 7,000 platelets - (At what platelet number should I get platelets or IVIG?)

And ldid not leave for Irelandeaving for Ireland... 1 year 8 months ago #59857

  • Cindy1
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Hi
Who knos the answer to your question but my kids and husband requested I did not come and meet them in Ireland. they thought it was too risky. I thought i'd be ok but just kind of gave up. sigh!

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Did NOT go to Ireland after all nplate vs promacta? 1 year 8 months ago #59858

  • Cindy1
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Hi,
Thanks to all of you for your support and thoughts. Just wanyed to update family requested I did not fly to meet them in Ireland. They were concerned for my safety. :(
Oh well wasn't worth the fight.

Thoughts now toward maintenance of this ITP.
Dr says get promacta rx filled in case I need it. I'd like to use as little meds as possible, any advice on dose and at what level I need to take it at and for how long?

One thought, would nplate be better because I can just take it when my platelets go to 10,000 and it works fast?

Thankful for this community.

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Did NOT go to Ireland after all nplate vs promacta? 1 year 8 months ago #59859

  • 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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Cindy:
My thoughts: The trip would have probably been fine with your counts now. Without medicating the next five days, it will be interesting to see what they are by next week. I think that if you would have medicated at those counts as suggested to prevent counts from dropping, you might have shot up to high, unsafe counts like you did in the past. Over-treating isn't good either.

The choice between N-Plate and Promacta has been spelled out for you. It simply comes down to what insurance will pay and a preference between weekly injections or daily meds. Don't worry about what your counts may or may not do before you start it. Chances are, there will be ups and downs while you start either med. N-Plate seems to cause more havoc with extreme highs and lows than Promacta does, so you might be more comfortable with Promacta. It can produce more stable results once the dose is adjusted to suit you.

With either med, it wouldn't make any sense to start unless counts go below 50k. I know you have a fear of dropping, but taking meds to prevent drops in counts sometimes doesn't make sense. If counts are above treatment level, then there is no need to treat. Some doctors start Promacta or N-Plate at a high dose and then keep adjusting with every CBC. All that does is chase counts around and the patient never gets stable. It makes more sense to me to start at a low dose and adjust up if need be. N-Plate and Promacta are maintenance drugs and shouldn't just be used when counts drop like you would with Prednisone. They should be used to keep counts stable which means using Promacta daily or using N-Plate weekly.

My two cents.

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Did NOT go to Ireland after all nplate vs promacta? 1 year 8 months ago #59871

  • Hal9000
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Cindy1 wrote: ... They were concerned for my safety...

:(

They left you home ? Shame on them !

Doc gave you Promacta prescription? Usually one has to get insurance 'pre authorization' from their specialty pharmacy - which is a time consuming proposition. These drugs are very expensive. Usually the doc will want regular count checks for several weeks to get the dose right. With either drug I suspect you'll need a dose towards the lower end, a '1' for NPlate and somewhere around 12.5mg to 25mg for Promacta.

Let us know how your counts are going.

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