Hi there,

I'm on lifelong anticoagulation therapy (or as my hematologist keeps saying, indefinite, cause you never know what treatment they will come up with next!).

I know it can be scary. The question the docs are asking is, will you benefit enough from anticoagulation to outweigh the added risk if bleeding from being on blood thinners? The medical consensus is that the answer is "no" for a single unprovoked PE. So be reassured that coming off the blood thinners after 6 months is absolutely standard in your case.

That’s exactly what my consultant told me. I’ve had such bad luck in the last year I’m just a little worried it’ll all come back again. Also, I’ve been dealing with an accute anxiety disorder for the past decade which isn’t going to help either.

I just feel like I’m in limbo because they were unprovoked.

My hematologist (& most others) use a scoring model, like the "Dash score," to determine whether or not you can stop taking blood thinners after an unprovoked PE. Age, weight, D-dimer score, gender, use of hormones, are all weighed (0-1pt) to assess risk of recurrence. If your score is greater than 2, docs recommended continuing blood thinners indefinitely.

If I were you, I'd ask my doc how he/she was arriving at the recommendation. That way, you can feel at ease that your risk is low, based on actual research/risk scoring. Good luck!

Thank you, I will definitely ask her.

I hate an unprovoked PE and took the standard six months of blood thinners. I got off of them in June (they made me feel awful anyway). I checked clean for anything hereditary and all that. I now take a baby aspirin and some natural supplements (natural blood thinners that may or may not work). So far so good, but it's only been eight months or so.

Keeping my fingers crossed I can say the same to someone in eight months.

Do you have any theories what might’ve caused yours? I have a few myself.

What natural supplements are you taking if you don’t mind me asking?

I used to take nattokinase, bromelain, and a little vitamin E and ginger. Now I found this supplement called Fibrenza that has most of that stuff in it. I take one in the morning and one at night. About my PE, I started coughing a lot and had bronchitis, that turned into pneumonia, then my chest started hurting and was told I had a PE. I believe it had something to do with the sickness (I was sick for 2-3 months). A combination of dehydration, coughing, not moving much, that's my theory on it anyway.

TGrove, that's interesting what you've said about your sickness causing your PE. I had a similar situation. I was sick with the flu for almost 2 weeks--in bed for 4 days, dehydrated, and then immobilized for several days afterwards for 7 hours each day. But, my docs are calling my PE "unprovoked" and I'm on Xarelto indefinitely. All my blood tests were negative for clotting disorders. I don't know why for a first time PE and a DASH score of only "1" I'm on Xarelto for life. I'm getting pressure headaches in the temple area on the left side of my head, even though I drink between 68-90 oz of water daily. I wish my doctor would factor in my immobilization!

I am exactly the same. I don't think I need to be on blood thinners for life and calling it "unprovoked" seems inappropriate. Seems like a circumstance that happened and probably won't again. However the drs keep telling me that since I've had one I might have another. I don't like being on blood thinners, but I don't like worrying about another one. Catch 22

Sometimes I think in addition to looking out for our best interests, they are also covering themselves legally. Easier & safer for them to say "take it for life" than risk a lawsuit should there be a fatal recurrence. The stakes are high for us and them if they get it wrong.

Not all doctors recommend anticoagulants for life for an unprovoked clot. It depends on the doctor’s own protocol. I have had unprovoked clots, the first I was on anticoagulants for 6 months. They had some guesses what may have contributed to the clot but no definitive reason. The second clot occurred after I went off anticoagulants. Again no definitive reason but some more guesses about what was increasing my risk. Plus having clot always increases your risk for getting another clot, statistically, regardless if unprovoked or idiopathic.

Quite honestly, staying on anticoagulants is a risk. I mean putting young, healthy active people on anticoagulants is serious. I don’t think it’s a matter of doctors just saying take it for life so they are free from liability. It’s just based on their experience, based on studies they align with, the risk for that individual patient, etc.

I’ve been on some type of anticoagulant since 2007 (warfarin, lovenox, xarelto) I’m 53. I’m grateful I’m not dead. Collapsed in my home, rushed to ER by ambulance, administered tPA in ER because I’d probably die without it, had heart damage, PTS from the dvt, and yet here I am healthy, happy, whole... gladly popping xarelto daily. Would I rather not take it, sure. Who the hell wants to really take this stuff for ever?

If a doctor recommends life long therapy, it’s still up to the patient to decide if that’s the route they want to go. I don’t get why people get all bent out of shape with the recommendation. I mean, it’s just a recommendation, not a gun to your head. It’s like being perplexed about the recommendation to wear sun screen. Don’t wear it if you don’t want to.

Just weigh your risks and decide what you want to do.

rmb, making a decision contrary to a doctor's advice is a big deal when your life is at stake. Certainly something to get "bent out of shape over" in my humble opinion. Those of us who are mulling over the options are looking for support.

I take issue with your analogy of taking an anticoagulant to wearing sunscreen. Sudden death is a consequence of one and not the other. The stakes are much higher here. You may have come to terms with lifelong medication because you had a recurrence, and once you do, all doctors agree and the research supports lifelong anticoagulation. That makes patient choice much clearer and definitive. You survived twice! You are indeed one of the lucky ones.

Each case is so different, as evidenced in this forum. And, for those of us struggling with a doctor's recommendation vs. a personal decision, we need to have all the facts. Decisions about how long to continue anticoagulation are even difficult for the medical community, despite all the scoring models they use. The verdict is still out and more research is needed, because of so many variables in play. The current thinking now for management of unprovoked PEs is indefinite anticoagulation, if the bleeding risk is low.

I was very ill/flu/immobilized before my PE, yet doctors are characterizing it as "unprovoked" which I find confusing. Although I'm 66, I was very healthy, active, athletic & took only Vitamin D prior to the PE. I drove myself to ER and all my vitals were normal on arrival. ER doc said I was the "healthiest person he'd seen in weeks." I had 2 small PEs in one lung, which were gone in 2 weeks with no scar tissue visible. All my blood work showed no clotting disorders. My primary doc initially said I'd be on xarelto for 4 months & move on. So, it's shocking to now hear I'm on a blood thinner for life.

And, yes, no one wants to be on an anticoagulant for life, if they don't NEED to be. Or, stop taking a blood thinner, if that means your life is at risk. It's a big deal decision.

I’ve belonged to this site since 2007 and have been so grateful for it when I’ve been in the weeds. Obviously it’s a big deal to not take a doctor’s recommendation. I’m not saying anything flippantly about that or that it’s not. I just feel like that’s why you have to do the research, some soul searching and really weigh the risks for your personal situation. Get a second opinion. Ask tons of questions of your doc, like if it where him or her, what would they do. Sometimes that answer is quite revealing.

I’ve come to terms with it because what’s the alternative? Not coming to terms with it? You have to come to terms with everything that happens in your life.

And for the not wearing sunscreen analogy, well it’s still a risk. One is a sudden death and the other if you get incurable cancer is a slow painful one. Both are horrific in their own way.

My comments were more about people almost sounding miffed by their doctor’s suggestion they stay on anticoagulants. It’s just information you are given. Seeing it that way sort of takes the emotion out of it. I didn't mean to offend you with my response. I do have a right to my feelings and thoughts about it like everyone else.

It's difficult because nobody can predict a clot or really know the chances of a reoccurrence. I personally feel like I'm really low risk, but my hematologist thinks because I've had one, I will likely have another. I don't feel well on the anticuagulants, and I feel great on baby aspirin and natural stuff, but then I worry about it. I have a six year old, so my choice will most likely be to find an anticuagulant that doesn't make me feel awful (probably Savaysa) and stay on it, for him. We'll see though, because if I don't feel well on it, I don't want to be on it. It's all very difficult.

I am one of those that had a unprovoked and did the 6 months of thinners. They took me off when doc and I discussed thinking baby or low mg asprin would work just fine. 2 months later big clot which left 7 pieces in my lungs. Back on the cummodin. 2 months after that I am in hospital with a GI bleed needed a transfusion. 3 months after that I throw another clot while on cummodin. Now on Pardaxa and have seen a blood doc who told me no hereditary or auto immune factors. She told me to plan on thinners for life because sometimes they have no clue why. Hoping for the best for you.