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Clinical Trials Considering or participating in research studies

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  #1  
Old Thu Apr 17, 2014, 05:18 AM
Birgitta-A Birgitta-A is offline
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Location: Stockholm, Sweden
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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
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  #2  
Old Thu Apr 17, 2014, 04:09 PM
triumphe64 triumphe64 is offline
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Will it help PRCA patients? Or is it too early to ask?
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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/
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  #3  
Old Thu Apr 17, 2014, 05:52 PM
Caregive Caregive is offline
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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.
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  #4  
Old Fri Apr 18, 2014, 04:26 AM
Birgitta-A Birgitta-A is offline
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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
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  #5  
Old Fri Apr 18, 2014, 12:44 PM
triumphe64 triumphe64 is offline
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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 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/
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  #6  
Old Sat Apr 19, 2014, 05:29 AM
Birgitta-A Birgitta-A is offline
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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
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  #7  
Old Sat Apr 19, 2014, 02:32 PM
triumphe64 triumphe64 is offline
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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.
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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/
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  #8  
Old Mon Jun 30, 2014, 08:59 PM
gina66 gina66 is offline
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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.
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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.
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  #9  
Old Sun Jul 6, 2014, 09:56 PM
triumphe64 triumphe64 is offline
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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
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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/
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