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Reply | Forward Message #5374 of 5559 |
Re: [EvansSyndrome] alex

I'm glad to hear that Alex is a candidate for NPlate. I have spoken of this new treatment before, but I have a little more insight into it now.
NPlate is a new stimulating agent by Amgen, It used to be called AMG 531. It does not affect immune system like Rituxan or steroids. Instead it increases platelet production. This is obviously a good result. but it does have a downside: the need for constant IV treatment and dependence on the drug. After it is discontinued, counts plummet. There is another drug by Glaxo called Promacta that has a similar effect and can be considered instead of NPlate.
I hope you find this information helpful.
Constance McNamara
Administrator, Evans Syndrome Community Network
http://www.evanssyndrome.net/
Please note that I am not a medical practitioner. Any suggestion given in this email with regard to treatment options for Evans Syndrome are given strictly from a layman's point of view, and should be considered as such. Please consult with your physician before making treatment decisions.
On Wednesday, July 08, 2009, at 04:07PM, "aamom4ever" <aamom4ever@...> wrote:
>

hello everyone this is mindy, alex's mom havent been on in quite awhile Alex is having his famous summer drop just like clockwork his platlets are at 4,000 the doctors are frowning on using riutuxon again he has already had three rounds over the past 3 years they are leaning for the new medication called "en plate" not quite sure of the spelling but its a once a week shot and it raises the platlets. He underwent a bone marrow today since its been several years since he had one before they start the shot. So I wanted to ask if anyone is familiar with this new medication? The doctors are very excited about it.
Thank you , mindy (mom to alex 8 1/2)



Mon Jul 13, 2009 8:48 pm

elzangelgirl
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hello everyone this is mindy, alex's mom havent been on in quite awhile Alex is having his famous summer drop just like clockwork his platlets are at 4,000 the...
aamom4ever
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Jul 8, 2009
11:14 pm

I'm glad to hear that Alex is a candidate for NPlate. I have spoken of this new treatment before, but I have a little more insight into it now. NPlate is a new...
Constance McNamara
elzangelgirl
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Jul 13, 2009
8:49 pm

Thanks for the response about NPlate we are waiting for the insurance approval. Our doctor is excitied about this medication, she does not want to repeat...
aamom4ever
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Jul 16, 2009
5:23 pm

  Hi..Sorry to hear about Alex.  My granddaughter Madison is Alex's age(diagnosed with ITP/Evan's Syndrome one week before her 5th birthday) and we have...
randy or debbie shoen...
shoenfelts
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Jul 9, 2009
12:09 am

MINDY, sorry to hear of Alex's drop, that change is never easy. I was interested to hear of the new injection treatment Nplate and please keep us posted . good...
bettanmic@...
bettanmic
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Jul 9, 2009
12:52 am

Hi, all I am interested to hear what bad side effects you are hearing reported for Rituxan. I know there has bben increased incidence of a couple of kinds of...
Debby Wechsler
jmdjbw
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Jul 17, 2009
12:47 pm

What sort of side effects are you seeing? Jessica ... From: aamom4ever <aamom4ever@...> Subject: [EvansSyndrome] Re: alex To:...
Jessica Diggs-Growden
indigoleo27
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Jul 17, 2009
1:04 pm

hello everyone this is mindy mom to alex, well were back in the hospital he just got addmitted today. he never did start the Nplate all his count crashed and...
aamom4ever
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Jul 24, 2009
6:17 am

ben has been on cellcept for the better part of 6 years and it is his magic bullet. as long as he takes it (there were times when he was younger that it was an...
Shari Miller
sharim61
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Jul 24, 2009
10:31 am

DEAR MINDY, CELLCEPT SEEMED TO BE THE BEST SOLUTION FOR PAUL, AFTER TRYING SEVERAL OTHER TREATMENTS, I THINK IT TOOK TWO WEEKS OR SO TO REALLY KICK IN, PLEASE...
bettanmic@...
bettanmic
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Jul 27, 2009
12:09 am
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