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I have received a couple of invitations like this. Can anyone tell me what the advantage is to using this site? We already have a social media networking...
I apologize for this coming to the evans group. MyLife used to be reunion.com and it automatically sent invitations to my entire address book, without me...
Hi, all, My son, who has Evans Syndrome, will be going off to college this fall in the Cleveland area. I presume the medical center of choice is the Cleveland...
To all: We are now 7 month after surgery and Patrick continues to do well... As of Friday, HGB is 13.9, WBC 10.2 and PLT 419,000. Coombs test is negative since...
Hi Everyone, Â I saw this great positive message and I wanted to give all of you an update on my 14 year old Gabby. Â We went through the Rituximab in...
Glad to hear Gabby is doing well... Â PLT of 285 is great... Â Patrick is 16, tough for a teenager to have to deal with these things... Â My son appears to...
My daughter hannah went through all of the same...way to  much to mention. At a platelet count of 4000 we decided on rituximab. After 3 difficult treatments,...
All, Â I will always be holding my breath anf thanking you all with the breath of my body for all of your help. You have no idea how thankful I am for this...
I wish you all were here,,,noone can understand what this disease is. It is lonely and scary. I am scared for the future. Debbie ... From: cindy sherwood...
I am glad to hear that Gabby is going well, my son Paul now 22, has been thru many things with his Evans as well as other health and learning issues. BUT he...
Gabby was at a platelet count of 1k right before we started the rituximab. They wanted me to give her steriods again and I declined. I am so happy. The...
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...
 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...
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...
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...
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...
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...
Hi, After my son Sam, 12 yrs old, finished his first Rituxan treatment in February, he was put on low dose of antibiotic to protect him from pneumonia.. There...
All, The next step recommended for treatment in my 11 month old grandson is using the medication, mycophenolate.  His current treatment approach is not...
I have used cellcept (mycophenolate) for the past 6 years with prednisone, since I was first diagnosed. The doctors tried to put me on Plaquenil but my blood...
Hi Zeina,  I'm an adult with Evans who underwent Rituxan treatment 4 years ago and I'm still in remission. I didn't have any side effects or illness...
Judi My son, Paul now 22, had very good success with cellcept, after other treatments no longer worked for him, he still continues to have low platelets...
Hi Debbie, Thank you very much for your reply,, It made my day! I know different medicines work differently for each individual but because of the rarity of...
Hi, there! I took a total of three or four infusions when I was sixteen. I had an allergic reaction to it the first time, and serum sickness after the last...
Rituxan works for some evans patients because it destroys immune cells called B cells that are responsible for making antibodies (and autoantibodies). The...
... While not to be negative in anyway because we know all of our immune systems are different i sometimes wonder if the rituxin my son recieved several years...
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...
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...
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