Hi, everyone! This is the first time that I will post a message here. I guess I am desperately looking for answers. And any suggestions you can offer will be ...
... will be ... flares." This ... had Evans ... here's ... running ... and hgb ... concern we ... the brain ... trying to ... am now ... and I had ... body ......
Hi, Julie! Thanks for the reply. I have tried Cellcept before, but it didn't really work on me. The IVIG has always been helpful to me. I routinely have IVIG...
... IVIG has ... weeks. ... the other ... hemorrhage. All ... plays ... Yes, this ... <EvansSyndrome%40yahoogroups.com>, ... I was ... flawless as we ... of...
Hi Niguel, I'm so sorry to hear about your current struggle! It sounds like the doctors are trying numerous different options. Have you ever undergone...
Hi, Debbie! Thanks. Yes, we are trying to find something that will really work. I have done Rituxan (Rituximab) a few years back. I first had 4 infusions...
Dear Niguel, Sorry to hear of your current severe flare up, my son, Paul who turned 21 last week, had some very low counts in past years and he tried all of...
Hi, Betty! Thanks for the reply. I would very much be interested on any information anyone can give me about using substitute blood. One of my oncologists...
Hi Niguel, Betty has a great memory! Yes, the female (I believe her name is Emily), was given Hemopure. It was approved on a "compassionate use" program...
Hi, Debbie! Thanks for the info. Perhaps I will try retrieving the e-mails sent in the group years ago about the Hemopure. My physicians have never tried it ...
Hi! My name is Bev. I'm 54 and I'm in a flare up now. It was hard to get my counts up this time. My hemo went to 7.4 I've had 2 trasfusions in the last 2...
homesbybev@...
Apr 14, 2008 4:56 pm
Hello all~ I wanted to let you all know that I am still around :) I haven't had much access to the internet in quite a while, but when I'm able I read all of...
Dear everyone in this group, My name is Maxine. I am Nigel's sister. He was the one who started this thread. I was following your group for quite some time...
DEAR MAXINE, I AM SORRY TO HEAR OF YOUR BROTHERS PASSING AND HOPE THAT YOU CAN FIND PEACE IN THE DAYS AHEAD. BETTY **************Vote for your city's best...
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