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 a 35 year old male who was diagnosed in July 2017 with unprovoked bilateral pulmonary embolisms with a lower left lung infarction. My clots had dissolved by December 2017, but my consultant decided to keep me on 10mg of rivaroxiban until October the following year. My girlfriend fell pregnant in July 2018 and when I spoke to my consultant in October I told him I'd like to carry on taking my medication as I didn't want to cause my newly pregnant girlfriend any stress just in case anymore clots returned. Well fast forward to this day and I'm due to see my consultant very soon as he wants to take me off them. I'm very anxious just going cold turkey and I also feel sick to my stomach something sinister may happen especially since my daughter is only four months old. I've read on a few sites that it's dangerous just to stop taking rivaroxiban after being on the medication for multiple years, but when I asked my consultant last year he said there shouldn't be any problem.
Has anyone on here ever had unprovoked pulmonary embolisms and just stopped taking rivatoxiban after 2 plus years? Should I be weaned off? Any advise would be greatly appreciated as I'm a bit of wreck at the moment.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
This is a time of big changes for you, which I am sure is adding to your anxiety. On the clots front, it's pretty normal treatment for a first unprovoked episode to take anticoagulation therapy for 3-6 months, then come off. It's good news really, if your doctor wants to take you off the drug then it means your risk of another clot is low enough that they're more worried about a bleeding episode from the anticoagulants than about a repeat clot.
There are some things you can do to help reduce the chances of recurrence. Those preventive steps might help increase your feeling of control and reduce your anxiety too. Some suggestions include keeping properly hydrated, moving around every hour or two especially when you're travelling, leg and ankle exercises to get the blood going, elevating your legs above your heart for a while or wearing compression stockings, avoiding clothes that cut off your circulation like socks with a tight band, and my doc has me take a baby aspirin on days with a long travel.
Talk to your doctor about your concerns and see what they say. Good luck with everything!
I’ve just read a few horror stories going cold turkey on Rivaroxaban which isn’t helping. If knew it was a DVT or something else I probably wouldn’t be as worried because I could take the necessary precautions, but because they were unprovoked I just feel like I’m a ticking time bomb again.