Home         Forums  

Go Back   Marrowforums > Treatments > Clinical Trials
Register FAQ Search Today's Posts Mark Forums Read

Clinical Trials Considering or participating in research studies

Reply
 
Thread Tools Search this Thread
  #1  
Old Thu Apr 17, 2014, 06:18 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
New drug, INCB47986, for anemia

Hi All,
Here is info about a clinical trial with a new drug, INCB47986, for anemia:
http://www.mdsbeacon.com/news/2014/0...tic-syndromes/
Kind regards
Birgitta-A
Reply With Quote
  #2  
Old Thu Apr 17, 2014, 05:09 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 437
Will it help PRCA patients? Or is it too early to ask?
__________________
Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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
  #3  
Old Thu Apr 17, 2014, 06:52 PM
Caregive Caregive is offline
Member
 
Join Date: Nov 2013
Location: USA
Posts: 61
Thanks, Birgitta, I read the info and printed out a copy for my husband's next appt with the hemotologist tomorrow. He seems to not like my input but I'll give it to him anyway. I doubt my husband is elibible due to age but there may be others for whom this offers hope.
__________________
Caregiver for husband
Reply With Quote
  #4  
Old Fri Apr 18, 2014, 05:26 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Incb47986

Hi triumphe64,
You know I googled the drug and they started to try to treat inflammation in RA patients and then anemia in MDS. PRCA is so uncommon that they probably wait with testing in these patients. As soon as the drug is approved (that will take years) doctors can prescribe it off record.
Kind regards
Birgitta-A
Reply With Quote
  #5  
Old Fri Apr 18, 2014, 01:44 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 437
Quote:
Originally Posted by Birgitta-A View Post
Hi triumphe64,
You know I googled the drug and they started to try to treat inflammation in RA patients and then anemia in MDS. PRCA is so uncommon that they probably wait with testing in these patients. As soon as the drug is approved (that will take years) doctors can prescribe it off record.
Kind regards
Birgitta-A
Birgitta,
I enjoy your posts.

I have had great success with Danazol. I'm sure it is off label also.
I'm sure some of my peers may benefit from an alternative when it becomes available.

Thank you.
__________________
Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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
  #6  
Old Sat Apr 19, 2014, 06:29 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Danazol

Hi triumph64,
It is interesting that several members have a good response to Danazol. I wonder if they all have short telomeres like Greg. http://forums.marrowforums.org/showt...highlight=greg
Kind regards
Birgitta-A
Reply With Quote
  #7  
Old Sat Apr 19, 2014, 03:32 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 437
Dr. Maciejewski told me that Danazol is an anabolic steroid. The added muscle it builds stimulates the need for more red cells.

I have been taking it for about five years. A year ago my Hg reached the bottom of the normal range, and I finished the taper of the cyclosporine and prednisone in October. My Hg was 16 on March 12. It had been 14.8 a month earlier. Dr. M. indicated I may no longer need it, but the dose I take (200mg) is small and I should continue for now. I see my local doctor on Tuesday, so I will ask her what she thinks. I understand there are 100mg pills available.
__________________
Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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
  #8  
Old Mon Jun 30, 2014, 09:59 PM
gina66 gina66 is offline
Member
 
Join Date: Oct 2012
Location: Roland, OK
Posts: 26
Danazon

Hi Triumphe64. Danazol did not work for me. I took it from 300-600mg within 6 mos. period. I will try Rituximab next. I saw Dr. M 2 weeks ago. Glad to know you are still active on this site.
__________________
PRCA, infected by Parvovirus. Took Prednisone 20-60 mg/day for 6 mos., Cyclosporine 100- 200mg/day for 6 mos., Exjade 1000-2500 mg/day current, Warfarin 3-4mg/day, Cyclophosfomide 50 mg/day for 4.5mos., Campath for 2.5 mos, Danazol 200-400 mg/day for 6 mos. Currently- Rituximab for 4 wks.
Reply With Quote
  #9  
Old Sun Jul 6, 2014, 10:56 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 437
Quote:
Originally Posted by gina66 View Post
Hi Triumphe64. Danazol did not work for me. I took it from 300-600mg within 6 mos. period. I will try Rituximab next. I saw Dr. M 2 weeks ago. Glad to know you are still active on this site.
I almost missed this post. I'm sorry Danazol was not successful for you.
It is all I'm taking now (200 Mg per day), and my counts are normal. My local doc will soon try reducing it to 100 mg. I see Dr. M again in September. I think both doctors are actually surprised.

Ron
__________________
Dallas, Texas - Age 75 - Pure Red Cell Aplasia since 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
Chemo drug used for AA (without BMT) Lucky AA 7 Fri Aug 9, 2013 02:04 AM
Why drug treatment instead of BM transplant? Cheryl C MDS 3 Sun Feb 19, 2012 06:13 AM
What is the case FOR drug therapy?? GaryV Drugs and Drug Treatments 11 Thu Nov 4, 2010 09:37 PM
Individual drug response Birgitta-A Drugs and Drug Treatments 2 Fri Sep 25, 2009 01:48 PM


All times are GMT -4. The time now is 05:27 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2017, 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 2006-2016 Marrowforums.org