Marlene, Sorry to hear of your news about Nick, I am not to sure what Lupus is all about, Paul had some other autoimmune before Evans were he lost the ...
Dear Betty, I am glad to hear that Nick is enjoying the "normal" things a 16 year old should enjoy. I hope his Rituxan treatments will help in the long run...
Jeff Ash
jeffery_1977@...
Jun 2, 2003 5:11 pm
2256
Betty, I smiled at the sentence about Paul and his friends going to dinner. This is a bitter sweet disease. The down side is awful but we do appreciate the...
Marlene M M Pritchard
opca@...
Jun 2, 2003 8:55 pm
2257
Hello, Please bear with me as I am not sure how these message boards work. My daughter has been diagnosed with ALPS after four long years of not knowing. I'm...
Cathie, What exactly does ALPS stand for? I'm certain I've seen it but can't drag the info from my memory! :) Some of the other members may Marlene ...
Marlene M Pritchard
opca@...
Jun 3, 2003 7:36 pm
2259
Good Morning Everyone! Danielle had her port put in yesterday and all went well. Normally it is an outpatient proceedure; but they kept her overnight since...
I'm glad to hear that the port placement went well and that Dani is home. I hope things continue to go well (Micah has always had a good response to ...
punstoys@...
Jun 4, 2003 7:45 pm
2261
I am so glad to hear that Micah is responding to the prednisone. Has he done well with it in the past? Danielle is currently on 40 mg per day; down from 80 ...
Dear Robin and friends, Micah has been maintained for nearly three years on 10mg of prednisone daily. When his platelets crashed (three years ago for about...
punstoys@...
Jun 5, 2003 1:56 am
2263
Hi Shelly: Danielle also hates the prednisone, right now she is on 40 mg per day down from 80 last week. She hates the way it makes her feel, grumpy, hungry...
Good Afternoon Everyone: I am so happy to have found this group. I really felt all alone just a month ago, and now I have all of you. Danielle got her port...
Hello Robin, Our daughter Rachel had Vincristine about 3 months ago, she had tired rituxin but it did nothing. Rachel lost her hair, which is starting to grow...
Hi Robin, My son Ben has battled Evans for about 2 years now. Shari, my wife, is the detail one of our team but I'll take a stab. We wrestled unsuccessfully...
Hi everyone, I ran across this diet information for ITP today and thought you may be interested. <A HREF="http://www.pdsa.org/dietsuggestions.pdf">Click here:...
Hi everyone, Thank you so much for the prayers and kind words...once more, I believe that this is what has made the difference! Katie came home from the...
Hi Mark, Thank you so much for your response. I have passed Ben's email address on to Danielle, I'm not sure if she'll email him or not but it's nice to know...
Everytime I check this board I am more and more at ease with Danielle's condition and progress. It is so incredibly comforting to have an outlet. Our lives...
Hi Lou, Enjoy your break-you deserve it. Please know that we will pray for Katie's well being while she is away. I'm sure she will be well taken care of. She...
Thank you Grace, you are so sweet. Can't wait to see her tomorrow morning! Lou Lou Addington, RN, CLNC Legal Nurse Associates, Inc PO Box 290203 Port Orange,...
Hi Lou, I'm so thankful to hear Katie is not only doing better, but out exploring the world at a kids camp! My son went to a diabetes camp for the first time...
In a message dated 6/3/03 3:05:04 PM Eastern Daylight Time, ... Hi Cathie, I'm sorry to hear about your daughter and her ALPS diagnosis. From what I ...
Hi everyone, I have just been reading through lots of my emails I had not gotten to yet and wanted to thank you for all of the love and support we have...
hi everyone! well just thought i'd write to tell you of something in the pipeline for the very near future! i'm off to Brussels to meet with MEP for health to...
In a message dated 6/8/03 12:04:25 PM Eastern Daylight Time, ... That is wonderful news Michelle! We will all have our fingers crossed and extra prayers...
Lou, Glad to hear that Katie is home. I will continue to keep her and your family in my prayers. Thanks so much for all you do! Danna (31 with family history...
hi everyone, Ben (12) is being weaned from cellcept and his doctor was discussing alternatives if he has a problem with his blood counts. We could go back to...
I was reading through "Star" Magazine today, (yeah I know, real high class reading." and I saw an article about the woman on The Munsters involving Rituxin. I...
hi! my husband is 27 and had 4 treatments of rituxin from the first of feb-first of april. after the 3rd treatment, his counts went up to 150,000. he...
