well we are trying to be patient on this rituxon tomarrow will be two weeks since we finished the 4 week treatment and still nothing we went in today for...
i know how hard it is to wait. ben waited a full 3 months for the rituxan to kick in (after last treatment). his platelets were sub 10k from jan to june. now...
Mindy, Don't you just hate waiting !! Paul did not have great results from the rixituin but he did have some and it took several weeks. He is having good ...
Hi, I know waiting can be extremely trying - keep the hope and spirits up! I was diagnosed me earlier last year with Evan's. I went into the hospital emergency...
thank eveyone so much for the info on riutuxon well we are still waiting it is three weeks to day since the last treatment and we will get counts next week, i...
Cellcept is an oral pill , first used for patients with organ transplants, but as a side it quiets the immune system, IVIG is an intravaneous treatment given...
Blah, bad news. First my platelets went up to 153, which was excellent. Then they dropped to 49. SO now my prednisone is upped and I have to get a bone marrow...
Hey Lou It has been awhile since we last posted but that has not stopped us from thinking about you, Bill and your precious angel. Especially a few weeks ago...
Hi everyone, I haven't posted in awhile, but thought I would update you on Aidan and ask for some prayers as well. The good news is Aidan has not had an evans...
hi, How did things work out for paul? Sry it took so long to get back to you.Ty for the info.my daughter had rituxin in march & hse has been holding pretty...
Paul is not feeling as well, lately many it is the cold weather and so many others not feeling good. he is having in IVIG treatment this afternoon, he has his...
I am a school teacher with Evans and I would highly recommend that you find a school that has a program, of some kind, he is interested in. Ask him to at...
Betty, I was just looking through my book "Prescription for Nutritional Healing" Under Fungal Infection The Natural healing. It list the essential Nutrients ...
Thank you for your suggestions I am just starting the porcess for SSI and mass Health. There are so many things to be done and not enough time for it all. ...
i am updating on alex well we are about 9 weeks since our last riutuxon treatment his hemoglobin is stable since we started at 10.8 his platlets are going up...
Mindy, Has Alex ever tried vincristine. I know he was on cyclosporine, but I could not remember what else he had tried. I am thinking of you. Amy (Aidan...
Hi Spencer, What a brave young man you are, I know that this is not easy to thru for your niece or family at all, But let me say this , my daughter whom at the...
... and he went off the vincristine and stayed on the cyclosporine for awhile longer by itself. he has been on steroids for several years and also has tried...
Mindy, Have you tried vincristine this time for his platelets? Maybe if it worked for his hemoglobin it along with cyclosporine and steroids would work for...
hey guys, here is something for ya'll to check out. Just been playing around on it myself, pretty fun actually, lol, and even had a bit of interest from...
boni.greenslade7659@...
Dec 10, 2005 10:53 am
3997
Dear All, I´ve been read your messagens since December 2003, when I discovered I had Evans Syndrome. It was a battle for me, because I was always a healthy...
Hi Ana Luisa, I believe that your experience is unfortunately rather typical. I would say that it is probably time for another round of the Rituxin. With...
Ana Luisa, Yes, there are many treatments that can give months or years or relief. Our son (now 15 diagnosed when he was 10) also did rituxan this year (feb...
