Hi Rachael,

I haven't been on Warfarin, so I can't speak to the experience, but hearing my doctor describe it, it sounds like a horror show with all the testing, follow-ups, dietary restrictions,etc.

Granted I've only been on Xarelto for a few weeks, but I can't imagine a simpler treatment. An itty bitty pill taken twice a day for 3 weeks then only a single pill (triangle shaped.. fun!) once per day. I haven't had any side effects that I'm aware of, and I can eat anything I want with no INR testing or weekly doctor blood checks.

The noted "downside" with Xarelto is that there is no antidote (yet) like there is with Warfarin, so if you start to bleed, there's no magic shot to stop to it. However, it also leaves your system much faster than Warfarin, plus the risk of internal bleeding and stroke from the drug is much lower than that of Warfarin. I think the best line I read about the comparison was something to the effect of "why worry about what the doctors will do when you have a stroke or start to bleed internally when you can instead just take the drug that would significantly reduce your risk of being in that position in the first place."

Again, I've only been on it for a few weeks, but after popping a couple pills a day, I can't fathom being on the Warfarin regimen.

Also, from a money standpoint, if you go to Xarelto's website, you can sign up for a saving's card... I think it only wants your name and email address. This will let you fill a month's prescription for $10. Mine would have originally been $50, so, yeah, $10 is better!

Here's a recent thread on anticoagulant comparisons that may help you. There are many people here on Xarelto.

http://www.dailystrength.org/c/Pulmonary_Embolism/forum/17950367-anticoagulant-comparison-chart

Also warfarin isn't a horror show. I've been on it for over 6 years. It's manageable if you do ever need to be on it.

Rachael81,

Do you know if you are heterozygous for FVL or homozygous? Heterozygous is low risk, homozygous is high risk.

The clot "could" very well be the residual of the previous clot. Coumadin doesn't resolve the clot, it simply prevents your blood from further clot (same with the other anticoagulants). While it's possible to re-clot while on Coumadin, it is rare (but not unheard of).

I had been on Coumadin for roughly 20 years following two separate DVT's and a PE (2nd one happened three years after I had stopped Coumadin). In December 2012 I switched to Xarelto. Is Xarelto better than Coumadin - No, they are equally effective. Yes one patient may do better on one medication than the other but as far as which is better it's a draw at this point until further research becomes available saying differently. Yes it's nice to not have your INR checked monthly and there are no food interactions (other than grapefruit) but when when I was on Coumadin I ate foods with Vitamin K and maintained my INR (keeping vitamin K in your daily diet and within moderation prevents the INR rollercoaster associated with Vitamin K).

Xarelto does have an antidote (though not currently approved by the FDA, that will probably take place this summer). Xarelto remains in your system shorter, takes affect faster, but, is prescribed as a one size fits all medication and that is where research does not know if it is truely effective for each person since we all metabolize it differently. For some people, Xarelto may stay in your system therapeutic for 12-24 hours, for other maybe 8-10. Also it has not been determined yet if certain thrombophilias (clotting disorder) don't do as well on Xarelto. I now a few APS patients who did not do well so had to return to Coumadin. Why, because many APS patients require a higher INR (2.5-3.5) and since Xarelto is "supposedly" equivalent to a 2.5 INR (though it works differently) the current prescribed dosage may not be enough in the 20mg dose which is recommend for long-term/life-long patients. As more research becomes available it will be tailored individual to each patient.

Hi
Retired Navy has posted the following comparison recently:
http://files.www.clotconnect.org/Comparison_of_oral_anticoagulants_Final.pdf
I'm on warfarin, and Xarelto is one of the new kids on the block. Personally, I'm not too bothered about which I'm on as long as it works. If you were clotting again using warfarin, you could have increased the dose / increase your target INR, as opposed to switching anti-coags. My clots came back shortly after finishing the 6 months period, so my treatment was the same as the first time. If they recur while you're taking warfarin, my understanding is that they'll typically increase the INR target range to something like 2.5-3.5 or 3-4. You're playing a numbers game, "thinning" your blood to a level where it won't clot while minimizing the bleeding risk.

If they're not sure about whether the clot is new or not though, try and look on the positive side, it may well be old and your new hematologist is just being cautious. If you're taking anti coags, there is no reason to stop exercising, assuming you're up to it and you're reasonably careful. I had a 2nd set of PEs diagnosed on the Monday and did a 20 mile cycle on the Friday - although it was hard and my leg did swell up :-).

They can tell from the scan if it's an old clot or new clot so I'm not sure why your hema is disputing that since the radiologist report would determine that. BUT... I do think your hema is just being cautious because of your history. And I do wonder if she's just itching to put her patients on Xarelto. Sadly, that's what happens sometimes when new drugs come out.

By the way, you don't have to take a drug you're not comfortable with and unless your hema can say for certain you're clotting while on warfarin, I would ask her what it is she sees that leads her to believe it's a new clot. And lets say it is new... could you increase your INR range as suggested instead of automatically going to Xarelto? I'd also ask her how many patients who have a clotting disorder does she have on Xarelto and what has their experience been. I think we have a right to ask this information.

I'm not poopooing Xarelto, at all. I think it's great we have these options but I think all options should be considered so that YOU can decide what's best for you.

I have been on Xarelto since Sept of last year and no clots...I love the ease of use and I can eat what I want...I am a lifer so this is so much better.

Hello guys!

First of all THANK YOU SO MUCH to each one of you to take your time and answer me, its been a nightmare since may, I was in a hope to receive good news in 6 months... but... I will do anything to be alive!

First, @retirednavy, as far as i understood i am Heterozygous (AAaa) but my new hematologist is talking about a Lupus something blood disease that may be the reason why I am clotting for no reason. ( I am sorry i font have the papers here with the name)

@Tex99 I did not had a problem with my levels on warfarin, i was usually on 2.2 to 2.8 mostly, with an exception while on antibiotics, it went to 3.8 and i was extremely light headed. I was able to get Xarelto for 20 bucks, but i will check the site.

@rmb, thank you again for your super help, you may not know, but you were the first person that spoke to me here in this site, when I arrived completed scared 7 months ago. The doctor saw my older ultrasound and she could not see the clot there. In the new ultrasound it look like an old one, but she does not want to take a risk and affirm its an old one because its not clear on the past 2 exams. I have my right leg hurting and swollen since 2012, I have been in different doctors before the PE, and nobody could give me an answer. 3 weeks before my PE I was told to do not worry about it!!!!!! thats what scary me more, I dont trust doctors in general anymore.
the doctor told me, xarelto would work "stronger" if the clot is old, to help dissolve it , and if its new, then I am clotting on warfarin and this is a risk we dont want to take! We decided to treat like a second clot because there is no good old exam to prove it was there

@rosiethecat ( I also love cats too!) I always wanted to run, but I am overweight with asthma and I was always scary! So after a doctor diet I lost 37 pounds, and got me a treadmill. So I start to go faster and faster and then the PE happened. Somehow I put in my head that walking really fast made me clot, and now I am scary to do it again. I walk slow, (3.1) 1 hours a day, but I feel its not doing anything, I haven't lost a pound since I left hospital, and I was always afraid to eat because my vitamin K. Since I was told about this new clot I have not exercise again.
I believe be able to have a better diet will be a good point for me, but I wanted to be sure I am safe!
i need to work hard now to dont be afraid of exercise again. If anyone has tipos to help me encourage me i would really appreciate.

@RMB I asked her about patience that clot with warfarin and xarelto, she stated she would see it less with xarelto and she believe I will be more protected. (I hope so)
She also said we will do all exames again in 3 months, and if there is still a clot there, a news one, or anything, a filter in my veins will be an option too. She also said i will be with this drug for at leaf one year, but chances are it will be a forever one.( and i am ok with it, I do whatever takes to be ok)

@diamorrow, I hope to be lucky was you, I am preying for that very hard.

Thank you for all answer, i dont have nobody else to talk about it beside my hubby. and he is too worry already. my family does not know what happened because my mom is always sick, and far away from me

So, I started today, first dose. and i will let everybody know my progress.

The good news is that my CTscan show my longs are almost fully recovered and i am breathing good again.

God bless you all.

Rachael81,

Xarelto won't dissolve/resolve the clot; your own body will to some degree (through creation of urokinase). This usually takes place a few weeks/months following the occurence. whatever is not dissolved at that time becomes a permanent fibrinous scar (chronic clot) which obstructs (to some degree) the blood flow in that affected area. It's not life threatening.

Anticoagulants do nothing more than prevent the clotting cascade thus preventing further clotting. Thrombolytics are a whole different type of medication which is used to dissolve clots and for the vast majority of patients it isn't used unless the clot is life threatening (the risks of using thrombolytics often outweight the advantages plus there is a short window of opportunity where it is effective). Urokinase, as previously mentioned, is a thrombolytic and also something that your own body naturally produces to break down clots.

Here is some information about FVL that you may find helpful. One of the authors, Dr. Mary Cushman, is one of the best thrombophilia researchers in the U.S.

You mention something about Lupus; Was it Lupus Anticoagulant by chance? If so, test results can be falsely positive while on Coumadin unless the result are in the higher range. For many patients, a slightly elevated to moderately elevated while on Coumadin does not necessarily mean you have that particular clotting disorder. For Xarelto users, there is not enough information available to determine if Lupus Anticoagulant tests are affected by Xarelto/Pradaxa/Apixaban. You need to be off Coumadin for a few weeks and then be retested in order to have accurate results. The following article further explains:

http://professionalsblog.clotconnect.org/2013/04/22/thrombophilia-testing-reliable-on-anticoagulants/


R/Tom

I want to second what Tom said... a chronic clot is not necessarily a problem or even dangerous. It's basically a scar and it isn't going to break off and travel any more than any other scar will.

I have two chronic DVTs in my right leg. One is from 2005 and one is from 2009. They don't cause me any issues and my body has worked around the partial blockages by growing other blood pathways. The leg is a little larger than the other one, but I don't have any pain, discoloration, etc.

Also, as for the exercising, it is really a good thing and can helpp with healing! You should double-check with your doc to be sure, but there probably isn't any reason for you to stop exercising.

Here's also a exercise guide we did over at Clot Connect that you may find helpful:

http://www.clotconnect.org/patients/faq-frequently-asked-questions/faq-when-can-i-resume-physical-activities