Hi everyone, I have had Evans Syndrome since I was eight years old. I am currently 26 years old. I got sick in February 2004 but went into remmission in less...
niko--my husband has ITP and was treated 2 years ago with rituxin and went into remission. he was on the gamma globulin and i got pregnant with our now 15...
Hi everyone, I was wondering how many of you or your loved ones have been diagnosed with a primary immune difficiency besides Evans Syndrome? Any other...
Dear Amy, Nick's diagnosis started with Evans and Antiphospholipid disorder. About a year later they added Lupus - all autoimmune issues. His rheumatologist ...
Marlene M M Pritchard
opca@...
Jan 25, 2005 3:26 pm
3507
Hello everyone, I was planning on writing soon, but since Amy sent a message, I figured I'd send you an update today. First an update on Zack's health, then...
Amy, Erik has been diagnosed with hypocomplementia (I think that is how you spell it?) It was found he is low in two early complements C3 and C4. Your doctor...
Thank you Marlene and Heather for responding. Yes Aidan is doing well right now. His hemoglobin dropped this past October but he responded quickly to steroids...
does anyone know how Katie and Lou are doing? Jo Ann Lewis (Kelli 6yrs a-typical HUS)...
RICHPHARM@...
Jan 30, 2005 5:09 pm
3511
I talked to Lou yesterday. Katie is still hanging on. She went through another period of running high fevers but is back to running normal temps again. I still...
Hello, Just diagnosed with Hemolytic Anemia and on prednisone...not working...what's nect for a possile solution. I'd love to chat with someone else who has...
Hi Kath: When my daughter has gone through Hemolytic Anemia the only thing that worked for her was Vincristine (chemo therapy), others have responded to...
Hi Kath, I was diagnosed with Hemolytic Anemia in Aug. '04. It has been a roller coaster ride ever since. I was immediately put on 60mg of Prednisone a day...
Thanks for the update on Lou and Katie. I hvae been busy with work, now thru April I am working 7 days a week, but a while back some one asked about other...
Thank you for the update on Katie. Lou and Bill, appropriate words are difficult to find, please know that you are often in my thoughts and prayers. As I...
Hello. My name is Mykella. My son Gage was diagnosed with Hemolytic Anemia when he was 4 yrs old. They did the steroid treatment and gave him blood and it...
Hi there i would recommend Rituxin or Vincristine. I personally have had Rituxan twice and i had positive results Kath <kblake7@...> wrote: Hello, Just...
Good luck with Micah and it looks like at least is there every was a good time for something like this it is. Keep us posted and good luck. Betty Mom to Paul...
We are at the Children's Hospital in Oklahoma City. The staff and doctors in the Hem/Onc office are wonderful!! Mykella Clouse, mother of Gage, age 10...
In a message dated 2/3/05 7:38:54 AM Eastern Standard Time, essbeth3@... writes: Micah has been hospitalized since Monday. They have done an ultrasound...
Thanks for taking the time to respond. Here's the latest. After talking with his "adult" hematologist and consulting, by phone, with his hematologist from...
Shelly, You are great. Your plan sounds very reasonable. I'd hate to have him operated on somewhere where they really don't know and understand him and his...
Hi Shelly, I just read your post from the other day. Your current plan for Micah sounds excellent. Very few doctors understand Evans, so getting him to CHOP...
I too was skeptical about surgery and left South Bend Indiana and went to the Mayo Clinic for a second opinion. They too recommended the exploratory surgery...
question: anyone with rituxan experience - have you done anything about immune replacement while on rituxan such IVIG? My son Ben, had his first infusion...
my husband was on rituxin about 2 years ago and that is what FINALLY kicked him back into remission. we had tried everything else, prednizone, blood...
Dear Shelly, We are keeping Micah in our prayers and hoping they find the right answers for him and this can get resolved quickly. It sounds like the Drs have...
Aidan had four doses of Rituxan last year. At that time he was getting pentamidine monthly and was taking diflucan to help prevent bacterial and fungal...
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