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  #1  
Old Mon May 23, 2016, 09:53 AM
Shar Shar is offline
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Join Date: May 2016
Location: India
Posts: 3
15 days post ATG,platelets are at 4000 4 days after transfusion...

hi everyone, I am new to this forum..My mom was diagnosed with severe AA in April last week and her platelets count didn't improve even after 4 transfusions.She received hTG for 4 days in may 1st week during which she responded very well and her platelets hit 70,000.However immediately after ATG her platelets fell again.Now 15 days after treatment she has had 3 platelet transfusions and on third day cbc(may be before that) her platelets go below 10,000.Last SDP transfusion was on saturday, following her platelet count 4000 but no bleeding till date before/after diagnosis.We have already spent most of our life time savings on hATG(no insurance cover) treatment and SDP transfusion is costing us so much.My questions are:

1.Considering the fact that she is refractroy, how often should we give her SDP or just wait and watch for the ATG to respond?(As we lack funds, the amount saved on SDP transfusion can be used for buying eltrombopag one more month)

2.She has no PNH and her age is 59.She is currently on eltrombopag and cyclosporine and grafeel injection.Since she responded well during ATG, is there any way to predict her response time?

I request the experienced members to advice me on this ...
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Shar, Daughter of N, 59 year oldfemale,had only anemic symptoms since January,Dx SAA april last week, given hATG may first week, currently on eltrombopag,cyclosporine.Platelet counts hovering below 10,000 even after transfusions(refractory?)
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  #2  
Old Mon May 23, 2016, 11:42 AM
Neil Cuadra Neil Cuadra is offline
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Shar,

It's very tough to make decisions when you have a choice of treatments, you can't predict the responses, and you have financial limitations as well. You are asking the right questions, but I don't know the answers.

Can your mom's doctors take your financial situation into consideration when making their recommendations? You need trustworthy medical advice based on your mother's specific case, but it has to be practical advice too, meaning affordable treatment.

Your mom's recovery could take many months. If this situation happened to me, I would probably consider which treatments we could afford over at least 3 to 6 months, not just for the next few weeks.

I know there are patient assistance programs in India. Have you tried contacting whichever pharmaceutical company provides eltrombopag in India (GlaxoSmithKline? Novartis?) to see if you are eligible for their patient assistance program?

Be sure that your mom takes routine precautions to avoid bruising or bleeding. Here, for example, are some tips on living with a low platelet count.
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Old Mon May 23, 2016, 12:03 PM
Shar Shar is offline
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Join Date: May 2016
Location: India
Posts: 3
thank you

Neil,

I will take your advice and check for Patient assistance programs.hATG was the only treatment option she had and her treatment cost exceeded the estimate because of the many SDP transfusions.I will also try to check in other health facilities if I can get a transfusion at a lower cost. I don't know how long she may need transfusions. I just pray to god she be transfusion independent as soon as possible.
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Shar, Daughter of N, 59 year oldfemale,had only anemic symptoms since January,Dx SAA april last week, given hATG may first week, currently on eltrombopag,cyclosporine.Platelet counts hovering below 10,000 even after transfusions(refractory?)
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  #4  
Old Mon May 23, 2016, 09:14 PM
Margaret W Margaret W is offline
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Join Date: Dec 2015
Location: Michigan
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Shar, your mother is not necessarily refractory yet. Many people, myself included, were transfusion-dependent for quite awhile after hATG. Keep up hope, and those links you were given for assistance are very valuable.
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Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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Old Tue May 24, 2016, 02:35 AM
Shar Shar is offline
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Join Date: May 2016
Location: India
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thank you

Margaret,

Thank you for your valuable information. It seems that there are no PAP programs in India for revolade. I will check with my mother's doctor if we can increase the duration between the transfusions.
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Shar, Daughter of N, 59 year oldfemale,had only anemic symptoms since January,Dx SAA april last week, given hATG may first week, currently on eltrombopag,cyclosporine.Platelet counts hovering below 10,000 even after transfusions(refractory?)
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