Is there a reason they were planning to keep you on blood thinners for more than six months? Or maybe I should be asking, werr they planning to keep you on the bloodthinners or did the whole discussion of being done treatment just get missed because you wanted off the bloodthinners anyway?

I believe the standard therapy for a first PE is 3-6 months on blood thinners then nothing (no D-dimer tests either) unless something else is going on. I believe the D-dimer does not have a lot of value as a standalone test in the absence of symptoms, my understanding is that they just use it to see if they need to check out your symptoms further with the more expensive and invasive tests or if they can rule out a clot.

So. If it were me and I had no symptoms and no medical reasons to be on the bloodthinners indefinitely I would just do what you're doing but drop the monthly D-dimer (but get one if new clot symptoms pop up).

I'm thinking the same as you. The hematologist wanted to keep me on the blood thinners because they couldn't figure out why I had the PE in the first place. My thought is no more D-dimer tests because they're unreliable, and go to the Dr or ER if I don't feel well.

Hi! What side affects did you have with Xarelto.

On Xarelto, I was dizzy, felt like my head was in the clouds, couldn't even drive because of it. Then they put me on Eliquis, which gave me terrible chest and joint pain.

Did you get checked with another ct scan to see if blood clots were still in your lungs or did you just stopped taking Eliquis? My understanding per doctors is that stopping Eliquis can cause a stroke. I am in agreement about not taking any blood thinner for life. It seems this is being pushed.

Just stopped. The hematologist said that was fine

hi..i had a saddle PE december 16 2016 and I'm off of Xarelto...on for approximately 6 months. so it is now 2018 and i have terrible joint and knee pain. somedays i cant even bend my knee, anxiety so high and depression. has anyone else experienced these? ive had X-rays on my knee and hip, i have always had a "bad" knee from surgery year but never have i experienced pain from the knee like this...also my opposite hip achy and both thighs. im so frustrated by this because im trying to walk daily, but my fear of falling or knee going all the way out stops me. any advice or suggetions welcome

Teristalking2u. Are you taking a vitamin calcium +D3? I was told to take this for my bones. I haven’t had any issues but I do take that Dailey w Eliquis.

I agree about the Vitamin D3. Life changing for me. All my aches/pains disappeared when my levels bumped into the normal range.

I had a significant vitamin d deficiency several years. Only symptom was body aches, mostly in my arms and legs. Once I got in normal range, all that went away.

I believe body aches can be related to depression.

Teristalking2u, maybe look into some kind of physical therapy. If you have pain in your bad knee, you have probably been compensating for that with your other leg which can affect your posture, your gait, etc. That could all cause pain elsewear.