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Anti-coagulants for possible CTEPH
For those with CTEPH…..
They say that Eliquis is not a good option for CTEPH patients because it doesn’t keep the clotting at bay well enough. I’m thinking of asking my hematologist for a different drug, as I’m not convinced the Eliquis is working. I think he’d be willing to try something different–in particular, Xarelto. How is that as compared to Eliquis? Any experience or knowledge you’d care to share with me?
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7 Replies
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Hi, @Brenda Denzler; a few CTEPH patients continue to take Coumadin (warfarin). The downside is the labs are done to check levels each month. It’s also cheaper than the newer drugs of course that don’t require the monthly bloodwork.
Have you heard anything back yet from UCSD?
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Brenda, most CTEPH patients have been put on Warfarin (AKA Coumadin). There are some who have co-concomitant conditions that require a different anticoagulant. I apologize that I don’t remember the co-concomitant condition or the anticoagulant. I’ll see if I can find it.
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Brenda,
I have been on Coumadin since 2015. I wanted to shift off to Eliquis, but my hemotologist said “NO”.
He explained that there has been a ton of research on Coumadin, and we know it works. There have been only 2 studies ( as of last year) comparing Coumadin and Eliquis for CTEPH persons, and these two studies offset each other. One said Eliquis worked as well as Coumadin, and the other said it didn’t. He hadn’t seen any other data to confirm one way or the other. So no changes for me. I do have a home blood test unit so I can check weekly and I work with my PCP to watch over my Coumadin levels and help me adjust as needed. So Eliquis may work for some people, especially for other conditions, but it has not been proved to be effective for CTEPH.
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Hi, @Terese Tuohey, I have also heard similar about Coumadin versus Eliquis. Also, Eliquis is much more expensive.
Thanks for the reminder about the home testing option. This has been beneficial and makes it easier to stay on top of your levels without visiting a lab frequently. How long have you been utilizing your home testing unit?
Your experience and feedback will help those with CTEPH, like @Brenda Denzler and others.
I hope you and your loving hubby are doing well. Are y’all heading to FL soon for the winter? Take care, my PHriend.
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I’ve been home-testing for at least 2019, maybe 2018…?. Before that I had to go to the hospital lab for blood draws – ugh! My Dr in Fl (where we live to escape winter to winter in MI) had one of these small units. When I asked about it, he simply wrote me the prescription and told me to call the company. Easy-peasy. And I arranged to have it delivered to MI when I returned home, and started it there. I have had it calibrated with the hospital lab, and it is accurate to .1 vs the lab readings. My PCP helps me keep things under control.
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Hi I use Eliquis take 3 times per day I’m a combo PAH/CTEPH. I have had episodes of lung clots numerous sites in both longs inoperable once in 2010 and second episode in 2012 I used Lovenox sub q injection in stomach long term for 5 years as I could not take Coumadin, then transitioned to Eliquis 2.5mg three times a day
Something new on horizon for chronic lung clots in clinical trials is Factor XI. Good results so far in clinical trials, something to look forward too!
Most CTEPH patients are on Coumadin….due to breakthrough clots if they were on Eliquis or the other newer anticoagulants
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Addendum Factor XI inhibitor I meant to say many pharmaceuticals companies now have phase 1- phase 3 trials looking at his for new options to prevent clots, may take awhile before any of these are available to us….but this is still very good news!
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