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 good.shes 18.
sharon
>From: bettanmic@...
>Reply-To: EvansSyndrome@yahoogroups.com
>To: EvansSyndrome@yahoogroups.com
>Subject: Re: [EvansSyndrome] alex
>Date: Mon, 14 Nov 2005 09:45:22 EST
>
>Cellcept is an oral pill , first used for patients with organ transplants,
>but as a side it quiets the immune system, IVIG is an intravaneous
>treatment
>given over several hours which coats the platlets so that they hopefully
>last
>longer, this combination seems to be working for Paul and he goes once a
>month
> for the infusion of IVIG, we have been as often as every other week and
>as
>far out as every eight weeks, it is a matter of finding what works best
>for
>each person.
>
>Hoep this helps
>
>Betty ( Mom to Paul 18/evans)
Blah, bad news. First my platelets went up to 153, which was excellent. Then they dropped to 49. SO now my prednisone is upped and I have to get a bone marrow...
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...
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...
... 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...
well this is an update on alex he has been doing great since the riutuxon but now we are in the hospital with another line infection! he had a line infection...
My son Julius (age 5) had his lines put in in july 2005 and in November got an infection in the line and because he was done with the vincristine treatments...
well just an update alex had his broviac line removed on friday he is doing great he has just a regular iv until thursday to finish the antibiotic we will go...
hi mindy, just a reminder that it took our ben a full 3 months for rituxan to work for him (we had almost given up hope)- he had platelets less than 10k for 5...
Hi Mindy, That's awesome news! Thanks for keeping us up-to-date. We'll keep Alex in our prayers for continued success with the Rituxan! Debbie (45 w/Evans)...
well we are going home today after 14 days in the hospital for the line infection. we are excited they did one more cbc and his platelets were at 278,000 and...
Hello all, I am writing with an update on Alex. We went to the doctor yesterday for counts and all his counts are still in the normal range since the Riutuxon...
Hello - I just started treatments using Rituxon - I just wanted to get some feedback on how well it worked for others. My normal treatment is Prednisonse...
my 15 year old son went through rituxan treatment 14 months ago. although it took over 3 months to work, he has been fine ever since! good luck, shari (mom to...
Rituxon has worked for me i have had it twice this past time it lasted 26 months and now i have relapsed. I will start next week i think rituxan again to...
Thanks for the update! A 2+ reading on the Coombs test is a mid range reading. The lowest is 1+ and the highest is 3+. This strength is subjective though...
Nicole, As you will find on this site what works for one doesn't for another, my son did not have success with the Rixtuin but others who had it at the same ...
Hi everyone I am updating on alex. Im worried and taking him in today for counts he is not due for another week but his lips look pale to me! I feel so sick...
Mindy, We will be praying for Alex today. Please let us know as soon as you have the results. Grace (Katie 14 with Evans) aamom4ever <aamom4ever@...>...
Mindy, Im so sorry to hear that Alex has to go back. I hope that his counts are ok. Please let me know when you find out. I convinced Madison's doctor not to...
Well my instinct was right! His hemoglobin is at 7! They started him on steroids again i never wanted steroids back in our lives but i dont have alot of choice...
HI Mindy, I'm so sorry that Alex is back on steroids. I know how I dread that happening to Katie. Alex's symptoms were probably not a virus, but were a...
Mindy, We will keep Alex in our thoughts and prayers. Erik too experienced a fever and vomiting when his platelets dropped. Please keep us posted on how he...
Well hello to everyone, I havent posted in some time. My son is alex he is seven and was diagnoised wiht evans at 1 year old. We went for one full year in...
Hi Mindy, I just took some time to pray for Alex. I know exactly what you mean about it feeling like you are dreaming. We have all been there. When Katie...
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