My son has been on some dose of Prednisone since he was diagnosed with Evans in 1986. He has a baseline dose (now 10 mg) which he takes on alternate days -...
I have a three year old son who was diagnosed with Evans syndrome about 7 months ago. Jacob also had a heart transplant when he was 4 months old because of a...
Roger Dietrich
roger.dietrich@...
Jun 3, 2002 5:57 pm
1683
Roger - My son Tim didn't respond to anything initially until they tried Vincristine, also a chemotherapy agent. It worked incredibly well. A few other people...
In regards to your question about IVIG. I have had infusions of IVIG gamma gaurd since I was 3 years old for my immune deficent problem. Yes sometimes I do get...
a combination of vincristen and Rituximab worked for me eventually. I have been in remission since october from my evans, although I still get my IVIG every...
Hello, My son Alex is almost two he is on decidron right know our doctors our trying to weam him off right now and his counts are falling decidron is similar...
Dear Kate, Micah (age 20 in July) has been on some dose of Prednisone since he was 13. He's currently on 10 mg daily and has been for some time. In the past...
punstoys@...
Jun 4, 2002 1:21 pm
1688
Kate, In my mother's and brothers' (all three have Evans) cases, I believe that the doctor had them cut back 5 mg every three days until completely off ...
Dear Kate, We are currently doing the IVIG every three weeks on an outpatient basis, before it gets started the nurses give paul tynenol and benadryl which...
Hello everyone. I have been member of the Evan's group for quite some time but also haven't posted for a while. I have kept up with your postings though. To...
Roger, I just wanted to let you know that Cyclosporine has been my wonder drug. I'd definitely say it's worth a try. I also had a lot of ups and downs in my...
Mindy, I am sorry to hear Alex still has not improved. Did you mention to his doctor the combination of medications Adian used? I know each patient is...
... Thank you for asking we just went into the hospital sunday and monday for ivigg. I did tell the doctor about the meds that helped adian they had said that...
Well last week Alex's platlets were at a 23 now on friday they were down to an 11 he is going back in on sunday and monday for ivigg they said they are going...
Mindy, My son, Micah (almost 20), has been given vincristine three times. Each time, it has raised his platelet levels and has not had any noticeable side ...
punstoys@...
Jun 24, 2002 12:08 pm
1697
I have had Vincristine twice and although I was in bad shape with critical platelette counts, I kept on working as a teacher, and didn't lose my hair. It...
Hi Mindy, Vincristine is a chemo drug. It is given over a few minutes IV push. The most common side effects are jaw pain and constipation. Katie tried it for...
lnalou@...
Jun 24, 2002 1:50 pm
1699
Thanks for all the responses about vincristine it has really helped and made me feel alot better about trying it. We will find out after this last ivigg....
Hello everyone, Once again I know that we are not alone as we try to find better options for Paul. He was having IVIG every month, then three weeks and now...
Hi Betty I really can appreciate your frustration, I have been there also, unfortunately after 42 transfusions last fall and 1000mg a day of prednisone and...
Hi all, I haven't emailed for a while. Things have been very busy. I'm sorry to read of Paul and ALex struggling with the low counts. Prayers will continue...
In a message dated 06/28/2002 1:41:35 AM Eastern Daylight Time, ... Lou Addington, RN, CLNC Legal Nurse Associates, Inc. 386-322-2656 / Fax 386-760-5583 <A...
lnalou@...
Jun 28, 2002 12:29 pm
1704
Mindy, Ben (11) went through IVGG and vincristine treatments last summer but neither did anything for him. He was also on pred and other steroids. The combo...
--Hi, Alex's platlets are at a 5 now we are going in on sunday for two days of ivigg with an increase in the solimedral this time they are hoping it works....
Hi there, When Katie was a baby through probably 4 or 5 she had a lot of problems with diarrhea and bowel irratability. That seems to have calmed down in...
lnalou@...
Jul 9, 2002 1:58 pm
1709
Hi My son Andrew always has trouble with his bowels, his stool is practically always loose and has been over the years. Now that he has undergone the bone...
I agree about the meds, I am ok except when I am on meds. Speaking of which, one of my other side effects is weight. I have been attempting "Body for Life". It...
