Biologic Blood thinners, bleeding if accident, antidote Andexxa views

Posted by heidi2020 @heidi2020, Aug 12, 2020

Hi, my question is specifically regarding the new biologic blood thinners (I'm on Eliquis/apixaban), and I'm wondering a couple of things. Due to the bleeding risk associated with these blood thinners, and an antidote approved by the FDA becoming available late last year called Andexxa, I was wondering a couple of things:

1. Has anyone received Andexxa at any point to reverse the effects and what was your experience? Side effects, etc.....

2. Was anyone else told that it would be wise to live within 10 min of a major medical center that carries this antidote drug? (I found out that none of our local hospitals carry this antidote and do not plan too) I realize it is VERY expensive (I read 12K to 14K but truly have no idea, so I don't want to start false rumors, if this is important to you, please check and verify this information from a reputable source)

3, Question #2 above made me wonder if I'm on the right drug for me? If the reversal agent (Andexxa) is so hard to come by, has lots of pretty significant side effects in the common category, am I facing almost certain death if I'm in a car accident, have a bad fall, etc...?

Also, as a result of Question #2: If we want to do an across country travel travel trip, would any of these hospitals even have this drug? If we are going to move somewhere for retirement, do we need to buy a house within 10 min of a major hospital who carries this drug? (that's pretty limiting and definitely rules out anything in the country)

4. Because I clot to much, HIGH Factor VIII, which I can find VERY little information on anywhere in the world, just a few pub med articles and the like, and no one has ever heard of it before for the most part, I cannot find anything that would say if I could even use another drug like warafin, coumadin, etc.. and what the daily impact would be, as I do remember it required a lot of blood tests, but that was a long time ago and maybe things have improved, or perhaps you can do this yourself at home yourself now?

Any insight or information to others experiences would be appreciated.

Thanks in advance,
Heidi

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John, Volunteer Mentor | @johnbishop | Aug 14, 2020

Hello @heidi2020, That is a really good question and important for a lot of folks to know and understand. I knew nothing about it but what you have brought out would be a major concern if I were in the same position. I found something that seems to address some of your questions and thought I would share it in case you have not seen the article.

It's from the Mayo Clinic Trauma News - Jul 12, 2019 -- A Mayo Clinic pharmacist explains the benefits, concerns and uncertainties about direct oral anticoagulants (DOACs), including challenges: https://www.mayoclinic.org/medical-professionals/trauma/news/doacs-clear-benefits-yet-questions-remain/mac-20464705

I'm hoping other members that may have the same concerns will see your post and share what they have learned. Have you thought about talking to your pharmacist to see if they have some suggestions or information?

heidi2020 | @heidi2020 | Aug 15, 2020

In reply to @johnbishop "Hello @heidi2020, That is a really good question and important for a lot of folks to..." + (show)

Thank you @johnbishop, this was a great article. I appreciate your sharing it. One of the new to me things was that the antidote (if available) has to be brought down to room temperature and they need to know how to use/administer it. I have recently moved to a new area and have not found the same level of medical knowledge and care that I'm used to (having lived previously in Rochester/Mayo and Palo Alto/Stanford). I have found that becoming knowledgeable myself as my own advocate is going to be very important. So that's what I plan to do. Thank you SO much again for your response, it is greatly appreciated.

John, Volunteer Mentor | @johnbishop | Aug 15, 2020

In reply to @heidi2020 "Thank you @johnbishop, this was a great article. I appreciate your sharing it. One of the..." + (show)

@heidi2020, I'm glad the article was helpful. I too have found that it pays to learn as much as you can about your health condition and be your own advocate. I'm still hoping other members with some knowledge or experience will join the discussion. If you find out any more, can you provide an update? Thanks much!

heidi2020 | @heidi2020 | Nov 29, 2020

So, exciting information: I just found great information today on the Andexxa website and it's updated quarterly on who has the antidote for Eliquis (Apixaban) or Xaralto (Rivaroxaban) biologic blood thinners. You can put in the city, state, etc... and it tells you if they have ordered the antidote. I would verfity this information personally at the time of need, and I would not recommend anyone take this as anything but as a tool to help you, I just was excited to find this information out there as when I searched before I did not find any. But to say it was eye opening was an understatement. There were some surprises on who did and who did not carry it as well. I also found out you could buy it for $22,977..50 (for a 4 doses). So indeed it is expensive as people have indicated. But there is a lot of info there, and if others are concerned about availability when traveling etc.. too this could be a good resource. https://andexxa.com/locator/?location I'm finding out more information little by little to help me make more informed choices since I will be on blood thinners for the rest of my life. I hope this information is valuable to others possibly as well.

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