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 was curious what others experience has been and what your doctors have said about length of being on blood thinners. My PEs were in August 2014 and I was told I'd be on warfarin for at least 9-12 mo. I didn't think anything of that until reading here shortly after and seeing some folks on for as little as 3 months and sometimes 6.
At first I didn't mind being on as long as they planned. I liked the safety net and felt more at ease knowing I was on the medication, but surprisingly I'm growing more impatient with it and am actually looking forward to going off of it. I have to have weekly INR checks because my numbers are frequently all over. Being a mom of four little kids, getting in for INR checks can be a circus. Then there's just all the other incidentals - can I take this medication while on warfarin, oh that's gonna cause a big bruise, etc. I'm still anxious about going off, but hope for a good out come - I was one of those folks that had no risk factors at all and all genetic testing for what they know to test for so far, is normal.
SO, long post short - why the varied times for how long folks are on? When they have you go off is it full stop or do you get weaned off? Is there any monitoring process post meds to ensure you're not developing a new clot (quarterly leg ultrasounds? or d-dimers?)?
At first I didn't mind being on as long as they planned. I liked the safety net and felt more at ease knowing I was on the medication, but surprisingly I'm growing more impatient with it and am actually looking forward to going off of it. I have to have weekly INR checks because my numbers are frequently all over. Being a mom of four little kids, getting in for INR checks can be a circus. Then there's just all the other incidentals - can I take this medication while on warfarin, oh that's gonna cause a big bruise, etc. I'm still anxious about going off, but hope for a good out come - I was one of those folks that had no risk factors at all and all genetic testing for what they know to test for so far, is normal.
SO, long post short - why the varied times for how long folks are on? When they have you go off is it full stop or do you get weaned off? Is there any monitoring process post meds to ensure you're not developing a new clot (quarterly leg ultrasounds? or d-dimers?)?
-
Look at what my best friend did with my picture!
-
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.
August 2013, right?
Think it depends on the suspected reason for the clot, how extensive the clot, progress, doctor's personal protocol etc. I was told when I was diagnosed, I'd be on warfarin for 6 months to a year.
When you come off, you just come off. You don't need wean off. It depends on the doc and the risk factors with regards to monitoring. I think some people have a d dimer when they are off for a bit, but I don't believe it's done regularly after that. Also most docs don't do subsequent ultrasounds either.
Talk to your doc about it so you understand why you're on it and then really, it's your choice, despite what he may recommends. I think though you just want to get a sense of where he's coming from so you make an informed decision.
Thanks for your insight into your personal experience. I do have an appointment with hematology to go over everything. I know my clots (two) weren't very severe in terms of physical strain to my cardio system (even if it felt like it). I had normal vitals, echo, etc. so I suspect in my case its personal doctor protocol.
Anyway... yeah just ask your doc to see what he's thinking. And be honest with him about wanting to come off, how the INRs are cumbersome, etc.
Here is the summary of those guidelines which discuss "suggested" length of treatment based on cause of the clot:
http://professionalsblog.clotconnect.org/2012/02/27/new-accp-guidelines-%E2%80%93-dvt-and-pe-highlights-and-summary/
Some physicians may be aggresive in treatment and place their patient on anticoagulant longers than others physicians would. Latest studies suggest at least 6 months to prevent reoccurence following discontinuing anticoagulants.
Here is a slide from a leading researcher (Dr. Stephan Moll, UNC Chapel Hill):
http://clotconnectblogtwo.apps.newmediacampaigns.com/wp-content/uploads/2011/03/how-long-to-treat.pdf
His course of action is if the clot was caused by transatory means (birth control, HRT, Surgery, Trauma) than 3-6 months is suggested. All others means (men and women) 6 months or more.
R/
Tom