I've had severe AA for past 3 years
 

Hi- I'm a new member and would welcome chats w/others. I had received ATG (horse) therapy in 2003,had 1 year great remission, then relapsed in 2006 and went to NIH for the Campath protocol study. I go back in May for a bone marrow aspirate-that will be my 6 month mark and hopefully there will be cell growth. I receive hemoglobin -2 units-weekly to get my count to 10 and platlets twice weekly -they never get above 7-white count-.03 and AGC-100. So I am careful where I go and I sure am looking forward to Spring and being outdoors. It's been an adjustment to go from being actively employed, riding horses and showing dogs but I have gotten past the fears and am enjoying life as it is now. I get tired, bruise easily, and have begun bleeding in nose, mouth sores but w/the transfusions-they go away! My nurses are a blessing and always upbeat. Hope to hear from anyone. Barbara

Barbara
 

Hi Barbara, my name is Connie. I was treated with ATG and then had relapse. Then I was treated with ALG. It took a long time, and I am in partial remission. It has been 6 years now since diagnosis. I don't think you can just write much back and forth here. But if you would like, you can e-mail me at prissy1922@aol.com
But please put from "AA forum" in title, so I don't delete it. It might be easier to talk that way.
Connie

connie
 

Hi I was looking at your reply to Barbara and you guy's use alg as a treatment,I've been dealing with aa with my son for almost 4 years and I never heard of alg.What is it?
Thanks,
Julia

Julia
 

Hi. To answer your question, ALG is Rabbit serum. It works like the ATG ( only I think it is stronger). For me, it was harder than the ATG, but maybe that was because I didn't have much time between and was still pretty weak.
Connie

ALG vs. ATG
 

Just wanted to elaborate a bit on Connie's response. ATG is anti-thymocyte globulin and ALG is anti-lymphocyte globulin. They are similar and often used interchangeably, but they are not the same thing, and contrary to what many think they can both be either horse or rabbit serum.

This article may help explain the differences:

http://bloodjournal.hematologylibrar...t/68/3/712.pdf

Lisa V
 

Thank you for the heads up on the ATG and ALG. However, I did try to get that site but couldn't. Would like to read that info. Is there another way I can get it?
Thank you
Connie

article
 

It's an Adobe Reader file, Connie. I guess some computers have a hard time opening them. I tried to find the same article in another format, but all I could get was just the abstract, not the full text. Still, it does tell you something. Pretty technical, though.

http://bloodjournal.hematologylibrar...tract/68/3/712

I was trying to find something that explained it in layman's terms, but so far no luck.

Connie,

What kind of problem do you have trying to read the article? What happens when you click on the link in Lisa V's earlier post?

The article is a large PDF file (1.3 megabytes) so it might be slow to load. Did you wait long enough?

To help you and others, I've written some instructions in a thread called Reading PDF files. I hope it helps you solve this problem, because there are many PDF files with useful medical information about these diseases.

PDF files
 

I have a hard time to get them in, because we are dial up and it takes too long. By the time a pdf comes to me, I am kicked off line anyway. I wonder if the article and can by copy and pasted? Here is my e-mail if you can send it that way. Thanks!
prissy1922@aol.com
Connie

Connie,

I emailed you. Please tell me whether or not it works. If it doesn't, I'll try another method.

Hi Barbara:

My name is michelle - I was diagnosed with AA in October 2007, it has been a tough couple months and I would like to speak with you regarding coping techniques.....I underwent ATG therapy followed by serum sickness and am patiently awaiting a response.....my e-mail address is michelle_lapuz@excite.com

I look forward to talking with you!

Michelle

Neil - PDF Files
 

Neil, I see this was a pretty old post. I did want to read this, but guess I had forgot about it. I don't think I ever did get that e-mail. But PDF files take so long on my computer, that I get booted off line while waiting. Or sometimes it freezes up my computer. So both, my computer and server don't like PDF files. That kind of leaves me out of some good information.
Connie

Do you have a very slow dial-up Internet connection, Connie? If so, and you simply can't download any large files from websites or receive any email with large attachments, then I agree that puts you at a disadvantage. You might ask your Internet Service Provider what makes it time out and what you can do about it. Since you are paying them for service, it's time they gave you a little customer service.

I wonder if you could upgrade to cable or DSL Internet service (much much faster than dial-up) and consider it a medical expense! :)