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N-PLATE FAILING????

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14 years 5 months ago #19794 by jpb
N-PLATE FAILING???? was created by jpb
IVE BEEN TAKING NPLATE FOR PAST 6 MONTHS WITH A COUNT OF AROUND 150+ BUT OVER THE LAST SIX WEEKS MY COUNTS HAVE FALLEN AND ARE 63 AS OF TODAY I THOUGHT I WAS OUT OF THE WOODS SO TO SPEAK BUT IM WORRYING THE DRUG MAY NOT BE WORKING ANYMORE ANYONE HAVE ANY EXPERIENCE OF THIS

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  • Melinda
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14 years 5 months ago #19805 by Melinda
Replied by Melinda on topic Re: N-PLATE FAILING????
Have never taken the drug so have no idea. Thought I'd post so your topic goes to the top again.

You are still taking it right?

Have you talked with your doctor about this? That's what I would do.

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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14 years 5 months ago #19809 by Sandi
Replied by Sandi on topic Re: N-PLATE FAILING????
jpb:

Is it possible that you just need the dose adjusted? Counts will fluctuate on N-Plate.

The goal with the TPO's is just to keep counts above 50 anyway, so you are still doing great.

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14 years 5 months ago #19817 by jpb
Replied by jpb on topic Re: N-PLATE FAILING????
thanks guys ,yes im still taking it and the doctor says we will adjust the dose if and when it drops below 50 ,its just a bit of a concern when nothings changed and my numbers start falling after 6 months in the black

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14 years 5 months ago #19819 by nrcoach
Replied by nrcoach on topic Re: N-PLATE FAILING????
my dr is suggesting it for me....any side effects i should know about? What was your situation before starting it?

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14 years 5 months ago #19822 by Ann
Replied by Ann on topic Re: N-PLATE FAILING????
I have been on Nplate for over two years with no side effects. I started with a count of 2 and have had good counts on it although it did take a while to get stable increasing the dose and then decreasing it again later, and my count still goes up and down on occasions. I had months of 70 to 100 and then last week 29. I know it's gone up again now but I don't know the number.

Before, I had tried 6 different treatments and could only keep my count up with constant steroids which was not an option.

Nplate is my ideal treatment but if you are in the US you have to factor in that you probably won't be able to self-inject so will have to go to the doctor or hospital every week. That would spoil it for me.

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14 years 5 months ago #19840 by jpb
Replied by jpb on topic Re: N-PLATE FAILING????
Has your count dropped like that before Ann? mine did in my first few weeks but since then it you had been real stable. As for the drug itself id recommend it i only had mild headache after first couple of injections after that totally fine

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14 years 5 months ago #19842 by Ann
Replied by Ann on topic Re: N-PLATE FAILING????
I once went down to 8 for no apparent reason. Apart from that I tend to stay around 100 dipping down to the 70s occasionally.

I keep all my counts on an Excel spreadsheet making them into a pretty line graph so it's easy to see when it goes up and down. I see too that I just had my 150th count in these 5 and a half years. Nice!

I really wouldn't waste a worry on it. It's likely that you'll just bounce back up and carry on.

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14 years 5 months ago #19852 by cgoewert
Replied by cgoewert on topic Re: N-PLATE FAILING????
I have been on N-Plate for over a year now. My platelet counts fluctuated from 70 to 105. It seems the better I feel the lower the counts.

I receive a double dose every 3 weeks. what sort of regimen are you on?

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14 years 5 months ago #19883 by MikeDaVersa
Replied by MikeDaVersa on topic Re: N-PLATE FAILING????
I've been reading about Nplate because I am considering it as an alternative before actually jumping into Splenectomy and I was wondering if you guys are on Nplate with your spleen intact or are you using it after the actual Spleen removal?

And about it not working I just think it is a very fluctuant treatment in terms of dosage and how the bone marrow reacts to it. It sometimes may stimulate more than other times, Im not sure but it may be that.

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14 years 4 months ago #19891 by Ann
Replied by Ann on topic Re: N-PLATE FAILING????
I haven't had a splenectomy and have used Nplate for over two years. Studies say that those with a spleen need lower doses for some reason than those without a spleen.
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14 years 4 months ago #19898 by jpb
Replied by jpb on topic Re: N-PLATE FAILING????
I still have my spleen

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14 years 4 months ago #20190 by jpb
Replied by jpb on topic Re: N-PLATE FAILING????
My count this week was 37 so another drop so my dosage has been increased hope it does the trick. Does anyone on here drink with itp ?? i have only drank once this year and although im not a big drinker 4-5 times per year i do like a drink at weddings,birthdays ,christmas etc and does anyone here feel diet plays a big part in there counts nd is ther any concrete evidence on any food or food types/groups

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14 years 4 months ago - 14 years 4 months ago #20195 by Ann
Replied by Ann on topic Re: N-PLATE FAILING????
You'll get different views about alcohol and ITP. I drink when I want to which isn't a whole lot (once a week I suppose) but I do as I like and it's never made any difference to my counts. Same with foods. Some think that foods make a difference. I happen not to.
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14 years 4 months ago #20459 by jpb
Replied by jpb on topic Re: N-PLATE FAILING????
had my dose increased 2 weeks ago and last thursday my count was up to 91 so im hoping for good numbers again tomorrow even better would be being told im cured !! thats the dream im striving for

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  • weirdjack
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14 years 4 months ago #20498 by weirdjack
Replied by weirdjack on topic Re: N-PLATE FAILING????

Does anyone on here drink with itp

Yes, I drink with ITP.....I even drink things with alcohol in it. ;)
For most of my 'ITP experience' (hmmmm....sounds like a ride at Disneyland) I've fronted/sang/played-in a sleazy biker-bar band on weekends and always had a bottle of beer hanging off my mic stand. I normally don't drink 'hard stuff' (don't like the taste), but I usually have a good beer or two with dinner...sometimes wine. My hematologist and family doctor have no problems with this and I have noticed no platelet count difference when not drinking.

After all the crap we go through with ITP....we DESERVE a drink! :D

.

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14 years 4 months ago #20532 by jpb
Replied by jpb on topic Re: N-PLATE FAILING????
my count is up to 141 this week

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