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Old Wed Oct 22, 2014, 05:59 PM
Relentless Against SAA Relentless Against SAA is offline
Join Date: Sep 2013
Posts: 77
PROMACTA use out of the USA

In the USA, Promacta has been approved for patient's with Refractory SAA who do not have a 10/10 bone marrow match. It is also in clinical trail for Moderate AA. I was recently asked if and under what conditions Promacta is being used outside the USA.
For those of you living outside of the USA: Is Promacta being used in your country and what are the guidelines? Are you seeing good results? Any side effects?

Last edited by Relentless Against SAA : Wed Oct 22, 2014 at 07:12 PM.
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Old Wed Oct 22, 2014, 08:12 PM
Alcof Alcof is offline
Join Date: Aug 2014
Location: New Zealand
Posts: 22
New Zealand

Eltrombopag (Revolade in NZ) is only available for idiopathic thrombocytopenic purpura with Pharmac funding. My father is the exception to this as I wrote directly to GSK and they have funded it for treating his VSAA. He has not had ATG, but cyclosporine only treatment which failed to have any response. Currently in week 8 on eltrombopag. No response to date.
Father 72 has been diagnosed VSAA June 2014, was on cyclosporine as first treatment 06/2014 - 09/2014. 8 weeks after diagnosis doctor believe he would not survive ATG Treatment. GCSF 3 weeks Aug 2014 Currently on Eltrombopag 09/14 Danazol 25/08/14.
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Old Thu Oct 23, 2014, 03:50 PM
Relentless Against SAA Relentless Against SAA is offline
Join Date: Sep 2013
Posts: 77
Thank You for your reply. I am truly sorry to hear that your Father has not had a response to the Promacta. Question: have you noted any change in any part of the CBC? Do the docs expect a response yet or is it too early?
Please know that I am sending positive thoughts and prayers your direction
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Old Mon Oct 27, 2014, 03:10 PM
Sue H. Sue H. is offline
Join Date: Dec 2013
Location: Switzerland
Posts: 19
Promacta (Revolade) use outside USA

Hi All,
My husband Arnold(57 years old) took Promacta for severe aa (following minimal response to horse ATG) from Dec. 2012 until just recently (end of September 2014). He first started seeing a response on maximum dosage of Promacta. He was able to become totally transfusion independent and had a good response in all blood lines. Platelets were the first to recover - red blood took longer (last red transfusion Sep. 2013). At current time platelets are near normal, white too. Red much better but still lower than normal. He was monitored regularly ( 6 monthly bone marrow biopsies) plus monthly blood tests whilst taking Promacta and now, having stopped Promacta end of Sep. is being monitored every two weeks. So far so good, but we realise early days and just hope and pray that things stay stable.
Just wanted to give encouragement to others taking Promacta. My husband seemed to tolerate it well. Also still taking Ciclosporin (has been since May 2012 - they plan to start reducing if all stays stable ). We live in Switzerland and are lucky that Arnold had the chance to try Promacta (he is the first person in Switzerland to take it for severe aa as far as we know).
This forum is a wonderful support and we send warmest wishes to everyone treading this path.
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Old Wed Oct 29, 2014, 02:19 AM
Relentless Against SAA Relentless Against SAA is offline
Join Date: Sep 2013
Posts: 77
Thank you for your response. It is wonderful to hear that Promacta is really helping your husband.
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