Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi All
I have been a member here since I had my Bilateral extensive PEs in 2008. I found this site a huge support in the early days and hope I have returned that support in whatever I can give to new members,
As there was never a cause found for my PEs I am unfortunately a 'lifer; and have been on Warfarin since.My INR has never been the best at being stable as I have a few other health issues such as chronic neuropathic lung pain for which I take a variety of pain killers and a knee replacement a year ago. However, despite being the most stable health wise I have ever been in the last year my INR has been all over the place with big variations on even the smallest adjustments of dose.
My anticoagulant nurse is now suggesting that I should consider changing to one of the newer drugs either rivaroxaban or apixaban {uk names). I have a number of questions and worries around this and dont know if any of you have experience.
I suppose the big one is reversal in the event of a bleed/accident. Another is the 'psychological ' safety net of knowing my INR and dare I say it my dependency of seeing my nurse that I have a great relationship with after 6 years ' and who always answers my worries no matter how small.
Finally have any of you had any side effects from either of the new drugs?
Thanks all I know I can always rely on members for support and if I can help anyone from my experience as a 'survivor' 6 years on.
Kate xx
I have been a member here since I had my Bilateral extensive PEs in 2008. I found this site a huge support in the early days and hope I have returned that support in whatever I can give to new members,
As there was never a cause found for my PEs I am unfortunately a 'lifer; and have been on Warfarin since.My INR has never been the best at being stable as I have a few other health issues such as chronic neuropathic lung pain for which I take a variety of pain killers and a knee replacement a year ago. However, despite being the most stable health wise I have ever been in the last year my INR has been all over the place with big variations on even the smallest adjustments of dose.
My anticoagulant nurse is now suggesting that I should consider changing to one of the newer drugs either rivaroxaban or apixaban {uk names). I have a number of questions and worries around this and dont know if any of you have experience.
I suppose the big one is reversal in the event of a bleed/accident. Another is the 'psychological ' safety net of knowing my INR and dare I say it my dependency of seeing my nurse that I have a great relationship with after 6 years ' and who always answers my worries no matter how small.
Finally have any of you had any side effects from either of the new drugs?
Thanks all I know I can always rely on members for support and if I can help anyone from my experience as a 'survivor' 6 years on.
Kate xx
You might also run the searches int he DVT group, as it has been a topic of discussion over there also.
I started on coumadin in Feb for PE/DVT. And then in March switched to Xarelto(rivaroxaban). My INR was not consistant, and my DVT was looking iffy, so we switched. Xarelto has been fine for me, but as you will read in other posts, it is not for everyone. Not all patients fit in to the recomended dosing. Some people take more, and some take less.
Monitoring is one of the fears I had early on. You don't have the ability to test yourself to see if you are theraputic every week. But my hematologist sent me for a test that measures amount in system, homocystine levels and also my kidney function. Plus I was getting better and DVTs were resolving. There are tests out there to monitor the drug, but few hospitals have them, and insurance rarely covers them.
The reversing agent was a concern too, but there actually is one in the works, and hopefully gains approval soon! http://www.portola.com/clinical-development/andexanet-alfa-prt4445-fxa-inhibitor-antidote/
I'm not saying the bleeding is not a risk, but the effects of Xarelto leave the system rather quickly. Based on what I have read, most of the risk for Xarelto and bleeding is for brain bleeds, and gastro bleeding. And many of the legal cases involve people in their senior years, and were unhealthy. Not all cases, but many. I am going off of it for a Right Heart Cath next week, and I am stopping the drug 48 hours before, then picking it up right after. A little scary, but at least it's an easy transition.
I don't have many side effects. My indigestion/heart burn have gotten worse. But I have learned to be smarter with my diet. I do experience a few headaches too, but other than that, I have been fine.
Talk to your nurse some more. And maybe talk with a hematologist as well. Make an educated decsion that allows you to sleep at night. I wish you the best of luck!
I started out on Warfarin and was quickly switched over to Xarelto just for convenience purposes. I had really bad side effects (i.e. muscle pain, headaches, hair loss). I am currently off of it and will find out tomorrow if I can stay off. God forbid I become a lifer, I will definitely choose another medication. But just like others have indicated, you will want to try one for yourself, because it does not work the same for everyone. In addition, the dosing may play a big factor. I wish you the best...thanks for sharing your story.
I think a lot of my anxieties were about losing the safety net ( as I see it) of monitoring but I have had problems of letting go of a lot of things since I had my PEs as it was such a frightening time.
I am, with advice from your replies, the various threads here and my GP gradually coming round to the idea of changing. As my GP said I just have to trust the alternative drugs just as I would any other....like antibiotics etc.
You have all been very helpful as always and if I can ever help anybody with anything just shout!
Thanks again
Kate xx