Silvia, Art is on danazol 200mg twice per day and after seeing Dr Luzzatto, he suggested to remain on it if it was working , it was increasing his plts and hgb...

Art & Maritza, This is very good news! That hg is almost normal! (Well, it sure beats 9.) I was on Danazol for 11 months with no improvements. I was also on...

In a message dated 2/4/2000 3:28:27 AM !!!First Boot!!!, smarchesin@... writes: << as anyone's doctor suggested cyclosporine as a treatment? >> I was on...

How long were you on cyclo, Rebecca? It can take months (3-6) to respond. DId it do anything for your platelets or white count? Or are they ok? Silvia...

Sylvia, I was put on Cyclosporine and had a rare BAD reaction which put me in ICU. It was lodged in my brain. It took me awhile to get back to normal. I have...

Dear Friends, I'm re-writing this letter because my other letter didn't go through. My name is Mandy and I was diagnosed with pnh in October of 2000. Right...

Mandy, Welcome, I am really sorry to hear about what you have gone through adn going through. I hope and pray for your health. Although there is not much...

Hi y'all, I am back home after the ATG and it is good to be back. Feel free now, it went well, feel very tired and achy all over but still am happy to be home....

WELCOME HOME ASIF! Rebecca Gaskin PNH since 1997 Salem, Oregon 503-585-4729 <A...

Hi y'all, I just got AOL and my ID is fisa00 that is my name the otherway around with two zeros. It would be nice to talk to you guys once in a while. I hope...

Hi Mandy.. I didn't like Prednisone or Cyclosporine either!! I was miserable on Prednisone.. it made me depressed and moody. The Cyclo smelled horrible! It...

Saturday Dear Friends, You would have thought that after brain surgery, and PNH "flu" there would be a break...but PNH "Backpain" landed Mandy in the hospital...

Chris and Jill: God Bless you both! Mandy is very lucky to have such great parents! I hope she is well soon. I will continue to pray for all of us for a...

Chris and Jill, just checking in to see how you both are. Rebecca Gaskin PNH since 1997 Salem, Oregon 503-585-4729 MEDS: Coumadin 5 mg on Mondays, 7.5 mg the...

we are coping....today they put the marker on Mandy's grave which made it all to real. Glad to hear that the research fund has made it's first mark. Love you, ...

Dear Chris and Jill, When I saw we met our first goal of 30,000 I just knew you, your family and all of Mandy's friends were a great help in getting us there....

Hi Susan --- we too are so thankful for our extended family and friends who have given so generously to get this research started...we continue to mourn our...

Hello Chris & Jill I have been sorry to read about Mandys problems of late. She really is having such a rough time of it. I feel for you all. As a parent of...

Brenda, Thank you for your nice note. We have struggled greatly -Mandy seems to have it all. Mandy's brother was not a match for BMT - but the City of Hope...

Dear Chris I hesitate to suggest this, but if you are considering a non-allogenic BMT for Mandy, you might consider the trial at Johns Hopkins of high dosage ...

Thank you Tony - I will forward this on to our hemotologist to make sure he is aware. Chris Forehan...

Hi All: Finally, today is the first day in a week that I 'm starting to receive emails again. Still baffled as to what occurred. Did not get chance to see...