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...
... It was discovered that I possibly had Lymphoma in February of 2002. After two biopsies on enlarged lymphnodes (one underneath each arm in the armpit area,...
Hi everyone, Ana Luisa, My father now 84 has had Evans now for 6 years. He had spleen removed and after a while he improved, but continued on maintenance dose...
Nancy, Glad to see that you haven't lost your sense of humor, so important with all that goes on. Paul is starting to take driver's ed so I really find your...
Missy, My Mom has very bad RA and is taking HUMIRA injections every two weeks which she is finding very helpful any chance this might hekp you. Good Luck ...
... two weeks ... I'm not sure yet, we're going to find out.. I think we're doing really extreme harsh treatments right now because I have Lupus as well and...
I too suffer with RA and take Methotrexate 15mg weekly, 10mg folic acid weekly and 1 gram sulfasalazine a day and have done for the last 2 years my ra has...
Hello everyone who can understand and help us, My name is Jael and I am writing to you regarding my mother in law, she is 50 years old and very very dear to...
Hi, my daughter is 18 & she used the rituximab & is doing good.We haven't tried any other drug.Ya know what gets me is they don't know what causes this.She was...
Dear all, I´d like to thank all your the messages that I received with your histories and advises. I am still in hospital. My platelets are still down -...
Hi Jael, I'm sorry to hear your mother-in-law has been having such a hard time. Evans Syndrome as well as the treatment options seem to act very differently...
Hi Debbie, Thank you so much for your reply, it makes me feel better to know she is not alone with this illness. It would be helpful to know how long after the...
Ana Luisa, I have not heard of auto-transplant unless perhaps you are talking bone marrow transplant which some here have had. My son often feels okay even ...
Hi Jael, Thank you for all the good wishes. I was on prednisone after my splenectomy which was gradually reduced over three months. It seemed to be effective...
