Home         Forums  

Go Back   Marrowforums > Regional Discussions > Support Groups and Communities of Hope
Register FAQ Search Today's Posts Mark Forums Read

Support Groups and Communities of Hope Local support group news and activities

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Aug 31, 2022, 09:42 AM
Cathyfuz Cathyfuz is offline
Member
 
Join Date: Aug 2022
Location: Florida
Posts: 2
Anyone from Jacksonville FL area

Do you have virtual groups?
Reply With Quote
  #2  
Old Mon Sep 5, 2022, 06:49 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
There are several Facebook groups.
Support groups are also available at www.AAMDS.org Ask LeighClark
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Mon Sep 5, 2022 at 06:56 PM. Reason: add info
Reply With Quote
  #3  
Old Mon Sep 5, 2022, 07:00 PM
Matthew42 Matthew42 is offline
Member
 
Join Date: Jul 2021
Location: USA
Posts: 130
@ triumphe64:

I am so happy for you.

It is interesting that you Danazol was used to treat your bone marrow disease. I read that this drug has been used very successfully for treating refractory aplastic anemia.

My mother is no better after a year with severe aplastic anemia. It seems that the ATG and cyclosporine will not end up working for her, although the doctor says it's still possible, even at 2 years, for the ATG to "kick in."

There is no way my mother would be prescribed Danazol by her current hematologist. But, people have had, and still do, have real success in treating SAA with Danazol.

Please take good care of yourself.

Peace and happiness.
Reply With Quote
  #4  
Old Sat Sep 10, 2022, 11:23 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 455
Matthew42:

Thank you for the kind words.
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
San Francisco Bay Area California MDS Support Group Marrowforums Support Groups and Communities of Hope 10 Mon Feb 8, 2016 12:11 AM
SF Bay Area AA Specialist? JeriM Questions and Answers 3 Fri Nov 14, 2014 10:40 AM
Any AA patients from the San Antonio area? Michael_210 Your Local Area 5 Sat Nov 23, 2013 03:02 PM
How to find patients in your area Marrowforums Site Announcements 1 Tue Aug 12, 2008 12:34 PM
Dallas Area Support Groups penni1 Your Local Area 0 Thu Mar 8, 2007 07:18 PM


All times are GMT -4. The time now is 04:13 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org