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Reply | Forward Message #5372 of 5559 |
Re: [EvansSyndrome] alex



 

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 followed you for years as she has Evan's Syndrome and her platelets have been hard to keep at normal levels also.  I  just read your email, and tried to do a little search of the drug you are talking about.  you might want to check a few of these sites.  Debbie..."Nana to Madison..age 9 in August.)

 

Nplate  .....I believe this is how they spell it

 

AMG531

 

http://www.emaxhealth.com/2/95/27351/nplate-increased-sustained-platelet-counts-adult-chronic-itp-patients.html

 

http://www.nplate.com/patient/different_approach/different_approach.html

--- On Wed, 7/8/09, aamom4ever <aamom4ever@...> wrote:


From: aamom4ever <aamom4ever@...>
Subject: [EvansSyndrome] alex
To: EvansSyndrome@yahoogroups.com
Date: Wednesday, July 8, 2009, 7:07 PM

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)
Thu Jul 9, 2009 12:09 am

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shoenfelts
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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
Offline Send Email 		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
Online Now Send Email 		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
Offline Send Email 		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
Offline Send Email 		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
Offline Send Email 		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
Offline Send Email 		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
Offline Send Email 		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
Offline Send Email 		Jul 27, 2009
12:09 am
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