Hi and welcome! You might also check out the PE group, as the discussion there is more specific to PE recovery.

Very sorry to hear that you clotted a second time. What was your INR at the time of the repeat clots? It's possible that your INR dropped too low for some reason. Hard to say. Other, more atypical clotting contributors can be dehydration, being sick, sitting still for too long (like a marathon gaming session), sleeping in too tight clothes, or autoimmune disorders (although people usually already know they have those).

I'm also a lucky repeat clotter with no known causes. Had two DVTs (2005 and 2009) and then multiple bilateral PEs in 2010. No family history or clotting disorders, either, although birth control may have played a part in the DVTs. They told me in the hospital that I might just have something they can't test for yet--they're learning more about clotting all the time. I'm a lifer on warfarin at this point, although I have a home tester, so that makes it a little easier. My docs are comfortable enough with Xarelto to recommend it for me yet; and I'm not sure that I'm comfortable enough with Xarelto to take it yet!

Have you seen a hematologist? A specialist might be able to shed some light on what's going on with you and what the future might look like.

Hang in there!

Thanks Toss, I'll check that all out.
There weren't any alternatives besides Xeralto offered to me.
My INR was 2.5 in the ER when i went in on Wednesday. But it started hurting on Friday, so maybe it was lower then, I don't know.
One doc said the same thing that I may have something they don't know how to test for yet.

It's a bummer to get another clot, but I'm sure it's unsettling to have clotted while on warfarin. Is it possible you threw this new clot when your INR was low at some point,weeks ago, like maybe you had the clot for a while and it only recently started causing pain? That's entirely possible. My doc suspects that's what happened to me. I had the start of PE symptoms a month or two before I ever had any calf pain. He thinks the clot in my leg had been there even when there was no pain.

I'm on warfarin,so I can't speak much to xarelto but I suspect, based on some things I've read, that the recent advertised law suits may be, in part, due to litigation attorneys looking for big pay days because previous pradaxa law suits paid so big. It's like they're following the money. On the flip side, there's still unknowns about xarelto for sure and so that has to be taken into consideration.

Would you consider doing lovenox? I mean, you'd have to inject yourself twice daily but it's an alternative to xarelto if you're not ready to go down that road yet. Or, could they increase your INR range? I would definitely consult with a hematologist for all your options. And mine said the same thing after clotting a second time, that the there may be clotting factors that they can't test for yet or are unknown.

Take it easy and keep us posted.

Hi Billy, I'm a newcomer so I can't really help. I am sorry that they came back. I take a fish oil every day. I have heard they are great for clots, but I never did any research, I just started taking them. I started Xarelto 3 months ago. I see the commercials too! lol. I guess time will tell. I don't know how long I will be on them yet. Maybe like rnb said, you can ask about lovenox. Again, I know nothing at all but rnb and toss know a lot and have tons of useful info:) Just wanted to say Hi and say hang in there and feel better... I hope you get things sorted! Good luck!

It could very well be that my INR dipped and I didn't know it. Hadn't checked it since Christmas, because it had been so consistent. Was trying to get back in shape by walking, then jog a block on my walks.
I'm bummed, but determined to get on top of this.

Hi Billy,
You found a good support group here.
I have been on Xarelto with no problems at all since last July.
I have seen the same commercials and even ads in our local small town newspaper from lawyers looking for cases.
I mentioned this to my Dr and his opinion is that Xarelto is very safe. He said that lawyers throw out wide nets trying to find cases. I suspect he is right. I believe rmb posted a link to an article a week or so ago saying the same thing.
I also have a friend that has been on Xarelto for over two years for Afib with no problems.
I know I still get nervous when I think about it sometimes, but I think I would no matter what kind of anticoagulant I would be on.
Whenever I start fretting about it I try to divert my mind and keep busy.
Wishing you the best.

It was funny because the Vascular surgeon consulted with me in the ER and said he wanted to try Xeralto and to not get freaked out by the TV commercials I'd see about it.
Then when I got admitted to my room, the hospitalist came and said the same thing.
Well, that night in the hospital I couldn't sleep, so I turned the TV on and was watching it from midnight til 3am, and I kid you not, half the freakin' commercials were about Xeralto killing you and to call our lawyers!
The docs and I had a good laugh about it the next morning.

Sorry to hear about your reclotting. Did you thus reclot while on warfarin?

Xarelto is among the new generation anticoagulants e.g rivarobaxan (xarelto) and dabigatran (pradaxa). Xaralto has pros and cons. The advantage of xarelto is that
1) it alters only a very small part of the clotting cycle (inhibits Factor Xa), whereas coumadin (warfarin) affects the whole K-vitamin cycle (but K vitamin is important in clotting (e.g.wounds), but also important for bones. Reduced k-vitamin uptake due coumadin may in the long term cause osteoporosis and artheroslerosis).
2) does not need any INR testing.

The disadvantage with xarelto is that it has no antidote, which can be critical e.g after serious head injuries, where there is bleeding under the skull, and this is what these law suits are all about. It is however relatively quick to break down (i.e. short half life, so its blood thinning action is for much shorter time than for coumadin). For non-critical injuries is thus enough to stop taking xarelto until the bleeding is reversed.

With repsect to lovenox, then the problem with low-molecular weight heparin LWMH (ike lovenox is that it 1) requires injection, which can be done once a day, and 2) long-term use causes more bone thinning than coumadin and xarelto (xarelto should not cause bone thinning as it does not affect the K-vitamin cycle).

The advantage of LWMH is that it is very quick acting

Overall, xarelto is pretty promising although long term studies are lacking with repsect to side effects, as it is so new There are now several studies trying to find a antidote for xarelto (the antodode for coumadin is k-vitamin).

There are some trials with a new anticoagulant (cannot remember the name now, but I put out a post on that) that may have much lower bleeding risks. This is however very much in the preliminary stages.

All anticoagulants have their pros and cons. If you will stay on xarelto, to be safe it would be perhaps best to stay away from all activities (e.g. some contact sports) that could cause head injury (i.e. bleeding under the skull).

Yes, it was while I was still on Coumadin.

If you were trying to increase your activity level, that could definitely have impacted your INR. The theory is that more active people need higher doses because their blood goes through the filtering systems in the body more often, thus cleaning out the medicine faster. Don't know how accurate that is, but it is possible that your INR dipped while you were increasing your activity. Hard to say, although it is (to some extent) a moot point now.

Totally agree with Toss. My INR dips if I'm exercising more.

Makes sense Toss. Thanks.

I've been on xarelto since last March. I chose it because there is no testing, I can eat what I want. From what I read there is less chance of bleeding than taking coumadin. There is no antidote. I should be off the xarelto now but I'm caught between two Drs and a hematologist who can't agree on whether I had another blood clot last Sept. I was tested again in January and I'm now clot free. So I'm on xarelto for four more months. The doc at the hospital said because I had a PE they would like me on xarelto for another year. None of the drs say the same thing and I can't get two opinions that agree.

When I was discharged from the hospital I took it easy for a week and took a month to get back to a full work schedule. I have a farm and at that time I had 8 horses to care for and was still helping to clean up the ice storm damage from the month before. The only thing that bothered my leg was mowing with the tractor for longerbthan three hours at a time this past summer. I did have my veggie garden again and froze or canned the veggies. So I stay busy.

I learn something new every time someone posts. The collective knowledge and wisdom is worth more than any copay.
Billy, I'm new too so don't have a lot of advice.. Diagnosed w dvt in 9-2014 and have been on Xarelto since. So far so good but have had many sleepless nights strickly out of fear and depression.
I just wanted to say keep up the good fight. You've found a great discussion board.