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.
I'm not on it personally, just because I'm skittish about there being no reversal agent and because my doc and I want to give it a few years and see what kind of results everyone else gets with it. But I know some folks on these boards are taking Xarelto and hopefully they'll respond.
So far all seems well, other than last night I had about 3 drinks over a period of a couple of hours and ended up feeling really queasy about 3 hours after that. I haven't really been having more than an occasional drink since my PE so I may just not be used to it, but I'm wondering if it's actually some kind of an interaction for me.
Again I'm a newbie on this medication, I know there are people here with way more time in on the drug.
On the negative sides, the reversal agent in the event of a major bleed is not yet approved here in the States but is doing very well in trials. Still a lot of unknowns whether it is a one-size fits all dosing. As more information from studies becomes available I suspect dosing will become individualized. Still a lot of unknowns regarding long term side effects.
For me, I haven't noticed any negatives (yet). I feel less fatigues than I was when I was on Coumadin (for almost 20 years), bleeding as result of cuts and scrapes or no worse than Coumadin and have been easy to treat with standard bandaids/bandages.
It all comes down to what you feel comfortable with. One grey area I have been researching is how does this medication work for patients with certain clotting disorders. Since the medication in the 20mg dosage is supposedly equivalent to a 2.5 INR for those on Coumadin I do know certain disorder (like APS) may require a higher INR. This area has not been researched yet so the specialist don't have enough data to weigh in on whether certain clotting patients may not fair well on Xarelto as compared to other patients. Only time will tell as more research becomes available.
Initially the plan was to go with Coumadin--but my pulmonologist strongly advocated for Xarelto. Given my age (46) and very active lifestyle and demanding professional life, I'm pleased with the decision. Having never been on Coumadin, I can only imagine the challenges with managing diet, blood draws, etc.
I've been very pleased with Xarelto. I'm still tired, but I think that has more do to with still recovering than the medication--but I'll monitor over time. I've also noticed increased indigestion no matter what I eat--and that is a more rare side effect listed on the medication site. I'm really happy to only take one small pill. FYI--the recommendation is to take in the evening with dinner but I had my cardiologist office talk to the Xarelto help folks and they said it was fine to take with breakfast. The thoughts is that after fasting the medication doesn't absorb as well--but the key for use of Xarelto for PE/clotting is to be completely consistent when you take the medication. For me, breakfast was a better choice.
I have a series of scans (vq, cat, echo, etc) at the end of September to see how I'm progressing so I'll be curious to know what has changed since the initial diagnosis.
The great unknown at this point is will it work long term. For now, I'm pretty pleased and it seems to be working. FYI--i do now wear a medic alert bracelet indicating that i take Xarelto given the concern about now reversal agent--I want to be prepared in case of an accident.
Hope you're feeling well!