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...
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...
Hi all, When my son relapsed in December, it was immediately after a 5 hours flight.. As a result, we spent Christmas in hospital and had a terrible holiday.....
Hi Zeina, Whenever Nathan relapses now (not too often) i believe it's because he's caught a virus first and it's triggered the troublesome antibodies. Of...
Hi Zeina and Paul, I agree with Paul, by me it's the same as by Nathan and i also once get sick after a holliday with a pool with low chlorine. I made about 5...
erikhovingh@...
Aug 5, 2009 2:59 pm
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Hi Eric and Paul, Thanks a lot for your reply.. It's only one of many worries that has started having an impact on our lives since Sam was diagnosed with...
HI GROUP I RECEIVE THE ABOVE MAGAZINE, AT NO CHARGE, THANKS TO I THINK FROM THE GROUP, THIS MONTH HAS AN INTERSTING ARTICLE ABOUT VACCINES AND THOSE WITH ...
Hi, My son did a lot of flying last spring to college music auditions and never had problems that seemed related to it. Any of you/your kids ever contracted a...
Hi Debbie, Thank you for your assurance.. I hope your son gets better soon on the antibiotics.. Sam had his Rituxan treatment last February and he was since...
Hi Zeina, Erick Nathan has always been prescribed prednisolone and it has always worked for him. He was put on a large dose last August and was off it by...
PAUL, GOOD TO SEE YOU ON POST, MY SON, PAUL IS AT THIS TIME NO LONGER ON TREATMENTS BUT I WOULD NOT HAVE THE VACCINE SINCE I BELEIVE THAT WAS THE ORIGINAL...
Hi Paul, I'm so glad Nathan is doing so well. Katie has been in remission now for three years. We have decided that Katie will receive no vaccinations at...
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