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  #1  
Old Sat Nov 19, 2016, 06:47 AM
Lennyr Lennyr is offline
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Amicar for low platelets

My husband is diagnosed with raeb2. He has blasts of14% and his platelets count is below 10. His doctors have put him on amicar 500mg 6 pills three times a day. Does anyone have any experience with taking this drug? Also it is extremely expensive . Can anyone share how to get financial assistance with this drug?
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Old Sat Nov 19, 2016, 09:14 AM
Margaret W Margaret W is offline
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I certainly have experience with Amicar. It worked extremely well for me in many circumstances (I have aplastic anemia with a platelet count that, over the years, has been between 0 and about 30,000 usually). I can have no more platelet transfusions because, after 44 years, I've developed antibodies that prohibit my taking further blood products.

I was told about six months ago that Amicar would no longer be available to me. At first, I was told that "the drug is no longer being manufactured," and then I was told that no drug coverage would be available to me for Amicar and I'd have to pay for it out of my own pocket. (I'm on a Medicare Advantage plan through my husband's retirement benefits. I figure that as someone over 65, I'm being "phased out" myself.) Finally, I was told at the University of Michigan that no one would give me a prescription for it and, despite its fine success for me in the past with hemorrhaging problems, it would no longer be provided to me by any means.

Amicar caused no side effects for me, which was unusual because most drugs do, or I have allergies to them. Amicar worked well in stopping stopping spontaneous hemorrhaging and healing petechiae. Its unavailability to me is pretty distressing.

I wish your husband very well with this fine drug. I'm sorry it's so expensive for you - but at least it's available to him. Amicar (aminocaproic acid) helped me a lot!

Margaret
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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 Sat Nov 19, 2016, 01:31 PM
bailie bailie is offline
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Lennyr, unfortunately many of these drugs come down to insurance. What is your situation? I was also diagnosed with RAEB-II.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Sat Nov 19, 2016 at 04:08 PM.
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Old Sat Nov 19, 2016, 03:37 PM
Lennyr Lennyr is offline
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Thank you for your information re amicar

Margaret And Ballie - We have Medicare and united heathcare aarp coverage. They do still make the drug in 500 mg tablets. By the way we just joined so I'm learning the ropes regarding numbers and symbolic letters in reporting blood levels and disease types. I can see already how helpful this site is. My husband is 75. Vidaza did not raise his platelet count . He had a trial on promacta and did not tolerate it well. We are currently waiting to see if he qualifies for a trial on atra at Colombia Presbyterian hospital in New York. He has had red blood cell transfusions and platelet transfusions. Thanks again for your responses
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Old Sun Nov 20, 2016, 12:36 AM
Margaret W Margaret W is offline
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Well, maybe Amicar is in short supply or something and they only give prescriptions for it in the event that a person is diagnosed with RAEB.

That's fine, of course! I'm happy someone is getting it! I know it's expensive... But so is Promacta. I was told that Promacta would cost me $10,200 out of my own pocket for the first 25 days of treatment, with a 30% chance of doing me any good.

I'm about to book out of the University of Michigan.
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