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nplate

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13 years 6 months ago #23116 by jpb
nplate was created by jpb
first post since christmas day and im asking about nplate experiences ive been on it since april 2011 and up untill october /november was on the same dose 3mg/kg with pretty much the same numbers about 135-175 then they started dropping and the drug incresead every week or 2 and now im down to a count of 10 and my dose is 8-8.5mg/kg as of today 15/03/12 ???there are no answers nothing else has changed
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13 years 6 months ago #23143 by Wife#1
Replied by Wife#1 on topic Re: nplate
I started a thread on the Treatment board. You can read about my husband's similar story there. Basically, he had a dramatic drop in platelets this week after 3 years on Nplate. I'm not sure if his dosage was measured like yours in mgs.
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13 years 6 months ago #23488 by chasty
Replied by chasty on topic Re: nplate
I was on Nplate for about a month or so and started at a medium does I believe it was and was doing well for a couple of weeks and then my numbers went back down for a couple of weeks and they upped the doese and my numbers went back up. Now I'm on Promacta and off Nplate (this is the first week just on Promacta). I will see on Monday how just the Promacta works for me. It will be nice if I don't have to go to the doctor's office each week for a CBC or Nplate shot.
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13 years 6 months ago #23492 by Ann
Replied by Ann on topic Re: nplate
You didn't give the Nplate long enough. It can take a while to get stable on a dose. It took me quite a long time of going up and down and highering the dose before my counts suddenly went very high and I had to come back down the doses again. Now I'm on the lowest dose and pretty stable. The same can happen with Promacta so give it time and be patient.
  • dyan
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  • Ran a 1/2 marathon with a platelet count of 4.
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13 years 6 months ago #23501 by dyan
Replied by dyan on topic Re: nplate
I found I had to keep having the dose moved up to keep getting good counts, then it seemed I no longer responded to the drug. I had a year of good counts before i had no response. I had a disastrous 2 weeks trying to get off it as it seemed to be a waste getting it with no response at the extraordinary cost.I was at a dose of 300 at that time and my count was consistently under 10. The only way to stop my bleeding when I stopped the NPlate was to give me a double dose (600) for a few weeks. That was in October. The dose has since been slowly lowered to 350 and I now have counts that range from 667 to 97. Side effects started at the extreme doses and seemed to coincide with the high counts.

My doctor told me they find that sometimes just the right dose makes all the difference with this med. For me, 300 was not enough and 350 seems like too much! Hope this helps.
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13 years 6 months ago #23538 by jpb
Replied by jpb on topic Re: nplate
Dyan i think n-plate is supposed to work the higher the dose the higher the count ? im now on 1000 of nplate as of yesterday with a count of 5 and thats the maximum dose allowed for me i hope something happens or i think spleenectomy is on the cards for me.Ive been on n-plate for just under a year and as ive said before had a great response for the first 6-7months at counts of 150-170 with the same dose 250 then its been up and mostly down with increased dose lasting 2 weeks at about 50-60 and then down to 5-10 before another increase and now im at the max. Anyone got any thoughts on another step apart from spleenectomy . Ive had ivig,prednisilone,promataca with no response and doctor seems not keen for rituxin/rituximab