It can be very overwhelming in the days, weeks and even months following initial diagnosis of a blood clot in the leg, thigh or pelvis (DVT) or lung (PE). Initial treatment generally involves extensive hospitalization; a battery of tests including blood draws, scans and X-rays; perhaps thrombolytic therapy or clot-busting drugs to break up clots inside your blood vessels; or even surgery to place a filter in the groin area or to address an underlying and more critical issue at hand. Most, if not all, patients are put on anticoagulants – or blood thinners – for some amount of time ranging from a few weeks to a lifetime. Blood thinners decrease your blood’s ability to clot. They’re used to stop blood clots from getting larger and prevent clots from forming. Blood thinners do not break up blood clots that have already formed (the body dissolves most clots with time). As time goes by, the question soon becomes just how long will I have to take blood thinners?
It was one of the first questions on my mind once I could think clearly and for me, it did not come until after I was discharged from the hospital and was sitting in my hematologist’s office for my first follow-up appointment. I was more than hesitant when I asked then and just yesterday at my 16 month follow-up appointment, how long will I have to take blood thinners?
The answer was the same then as it was yesterday – I will have to take blood thinners for the rest of my life, due Antiphospholipid Syndrome. APS is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them, particularly in the blood, which causes clotting. I had slim hope that something would have changed in the last year, but it did not; while APS antibodies do come and go, the risk of them developing and producing another PE are too great to ever stop taking blood thinners.
Still, others will be on blood thinners for much less time or may go on and off blood thinners at different times in their lives. In fact, there are as many variables affecting how long a patient will have to take blood thinners as there are patients with blood clots. It all depends on the individual and most importantly, the reason for the blood clots to begin with. If you don’t know why you developed a blood clot, request a panel of tests to determine if there are any genetic or autoimmune factors that may have contributed to the clot as this can be critical in determining how long you need to take blood thinners.
In patients with an easily identified and reversible cause of a deep vein thrombosis (such as a recent surgery, strictly birth control pills, etc.) 4 to 6 weeks of therapy may be sufficient. Many patients who experience a DVT or PE with no identifiable cause (unprovoked) or strictly as a result of birth control may only be on blood thinners until initial concerns with the clot are resolved or birth control is stopped. This may be a few weeks at most.
For cases in which the risk of developing new blood clots remains high (such as in patients with certain cancers or even genetic factors, pregnancy, etc.), anticoagulant therapy may need to be continued for months to years.
In the case of someone with recurring clots (genetic or autoimmune disorders or additional medical complications that may contribute to clotting), he or she may need to take blood thinners lifelong (//preventdvt.org).
Doctors may recheck the leg and/or lungs with a Doppler imaging scan (or ultrasound) between 3 and 6 months after the initial clot. There would not be enough change to require a scan any sooner than that and keep in mind; your clots may never completely dissolve, resulting in residual scar tissue that may always be visible through medical scanning.
Most patients who have suffered from a PE and/or DVT are placed on blood thinning medications for 3-6 months as a general guideline. Again, it is of vital importance to discuss reasons for clotting with your doctor as well as your individual risk for a recurrence. Both will help to determine what your appropriate length of treatment should be.
Share your story. How long do you have to take blood thinners and for what reason? Did you expect to take blood thinners for as long as you are/did? What have you heard about length of treatment pertaining to blood thinners?
There is hope for healing and you are not alone,