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#1
Thu Apr 17, 2014, 05:18 AM
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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
Thu Apr 17, 2014, 04:09 PM
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Will it help PRCA patients? Or is it too early to ask?
__________________
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
Thu Apr 17, 2014, 05:52 PM
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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.
__________________
Caregiver for husband
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#4
Fri Apr 18, 2014, 04:26 AM
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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
Fri Apr 18, 2014, 12:44 PM
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Quote:
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
Sat Apr 19, 2014, 05:29 AM
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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
Sat Apr 19, 2014, 02:32 PM
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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.
__________________
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
Mon Jun 30, 2014, 08:59 PM
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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.
__________________
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
Sun Jul 6, 2014, 09:56 PM
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Quote:
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 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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