we've had good success with Rituxan as well. though hemoglobin has always been less a problem for my son than white counts and platelets, it also improved...
I just had 2 blood transfusions and the dr. has me on 100 mg prednisone plusx 80mg danazol. It took me a long time to come up this time. I was down to 7.4...
homesbybev@...
Apr 1, 2008 5:18 pm
5047
... Hello,went to clinic today we are going to try cellcept.Has anyone tried it?This one is new for us. Thank you for your responses. Julie...
Hello Everyone, I was hoping someone could answer my question. I have Evans and have had it since Oct 06. Was really sick by the time they caught It my hgb ...
Eileen, I don't have evans but do have AIHA and have been diagnosed since August 2003. My AIHA has never been in remission but there are still times that I...
Hi Lisa, Thanks for your reply. My hemo when I ask if i'm in remission he say's he can't say. I have tested positive since coming down with this disease. I...
My son has had evans for 3 1/2 years and has mostly been Coombs positive but he has never had any problems with his red blood cells. His platelets and white...
JULIE, MY SON PAUL HAD VERY GOOD LUCK WITH CELLCEPT, HE WAS ON IT MOSTLY FOR PLATELETS, HE HAD ALSO BEEN ON SIXMP, IVIG, PREDISONE, RITUAXIN, CURRENTLY HE IS...
Dear Group, I just wanted to share with all of you the good news that we will be celebrating Paul's 21st birthday this weekend. For the old timers like us,...
Betty, Thanks for sharing your good news with us!!! Have a wonderful time celebrating Paul's 21st Birthday! It is a huge milestone after everything he's been...
Dear Betty and Paul, Congratulations! You have great reason to celebrate and look forward to more good years! Marlene...
Marlene Pritchard
opca@...
Apr 2, 2008 2:55 pm
5056
Hi Eileen, I've been dealing with Evans for about 13 years and I've always tested positive on the Coombs test. It just means the antibody is still being...
Thank you for sharing this with us Betty. Tell Paul Happy Birthday for us. It is encouraging to see that Evans kids can reach adulthood and be doing fine...
Dear Paul and Betty, Many happy and healthy returns of the day! Learning the lesson of "Carpe Diem" at a young age is not a bad gift! Enjoy the weekend and,...
Debbie: What dose is the Imuran you are currently taking??? My son ahs been on Imuran since Sept 2007. He is being slowly weaned off of prednisone, he was...
Hi Erin, I have been taking 100mg of Imuran daily for several years now. I experienced a very serious crash in 2005. Unfortunately in addition to low rbc, I...
Hello there, My 8 year old son named Conner has had Evans for 4 1/2 years now. He actually has had very little treatment compared to others with the disease....
Debbie: Thanks for your response... Excuse any typos-I have been working a lot the past few days and it's catching up with me... My son, Patrick, is currently...
Julie, Paul did not have nay side effects from the cellecept, but did have his blood work checked on a monthly basis. Betty **************Planning your summer...
Hi Erin, I'm glad to hear Patrick's hematologist is monitoring him every two weeks. That's very smart. My main problem has always been the AIHA, but my...
Hi Debbie! Patrick is 15, he has been seeing the hematologist every 2 weeks since last March due the prednisone being lowered very slowly. Patrick seems to be...
Hi, Ern, My son, Nick was 16 when his auto immune adventure began. It's quite a heavy load for an active teenager - they want to be "normal" and know they...
Marlene Pritchard
opca@...
Apr 5, 2008 12:29 pm
5069
Hi Erin, Wow...it sure sounds like you have your hands full at work! Hopefully working for a cardiologist gives you a foot in the door for some good doctors! ...
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...
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