# Listening to Coumadin lifestyle riders



## JP Nuts (Jun 21, 2004)

My body has thrown 2 DVTs, one in a leg and last one in my arm and I have the Factor V Vierdan recessive gene that makes DVTs. The leg blood clot was explainable related to inactivity after surgery. The arm clot was almost at the exact spot of my landing on a pointed rock that also broke my collar bone. To orthodox medicine I will be a lifetime consumer of Coumadin. Those who are understand. I want to beat the conditions in my body causing the propensity to clot without prescription meds. 
I am asking for readers’ experiences either healing their body naturally or are living taking Coumadin.
Thanks


----------



## 11053 (Sep 19, 2009)

Lifetime of coumadin for me.
Won't go off the drug as it is not worth the risk of addtional blood clots and additional heart damage for me.
After the first DVT and massive pulmonary embolism, I wanted to get off coumadin as soon as possible. Shortly after coming off of a 6 month sint on the drug, I threw another clot and massive PE.
That one almost killed me outright-docs though I was on the way out-said goodbye to the people I love-got pumped full of thrombolytics- and had a rather exciting life flight to a major hospital-don't ever want to go through that again.

Once you've had a few clots and have been diagnosed with a genetic factor or syndrome, you are really playing the odds without some form of direct interference for the clotting factor.

In my opinion, coumadin isn't too bad. I have a home monitor, and adjust my own dose to keep my blood within range.

Soooo, I played a few games and monitored my blood without coumadin in my system and using natural "treatments"-guess what, nothing effectively kept my INR within the safe range for any length of time. Only coumadin "safely" does the trick in a way that can be easily monitored and adjusted.

So it's coumadin for me.

BTW, with an enthusiastic intake of alcohol, you can stay in range with a much lower level of coumadin in your system. 

Anyhoo, wish I saw this post a few days ago when I saw your rig parked in the lot of the health food store in Sedona. Always happy to see other riders still getting after it on the trails with the addtional risk of anticoaugulants and blood clots in their system.


----------



## JP Nuts (Jun 21, 2004)

Thanks for info, Norman.
BTW I am still hanging in Sedona.


----------



## F.N.G (Jan 6, 2008)

Pradaxa guys. If you live in Europe, it has indication for DVT. If you live in America, it is only indicated for non-valvular atrial fibrilation.
Good thing about it, other than its efficacy, is no INR testing and you can eat whatever!! Say goodbye to warfarin clinics!
Ask your doctor about Pradaxa (dabigatran).


----------



## 11053 (Sep 19, 2009)

Fortunately/unfortunately the replacement of coumadin with dabigatran is considered an off label use for people with clotting disorders at this time in the USA.

Access to the drug for people with known clotting factors is going to depend on a forward thinking doctor or a doctor and patient willing to take risks at this time.

Overall vibe appears to be that this may finally be an alternative to coumadin that won't trash your liver and kidneys, will have less bleeding risks for the effective dose, and be easier to monitor.

I know a clotter that plans on making the switch, very interested to see how it goes.


----------



## JP Nuts (Jun 21, 2004)

I read that Pradaxa is non reversible which presents a bleeding problem for surgery.


----------



## F.N.G (Jan 6, 2008)

Reversible with Fresh Frozen Plasma.


----------



## sandyeggo (Mar 6, 2011)

The thread that just won't go away... so relieved to know there are bikers out there who continue to ride while on warfarin/coumadin!

About two weeks ago, I noticed my right calf was hurting a bit. I figured I just tweaked it. Christmas came and went and I continued to ride. The calf still kinda hurt but it actually felt a bit better afterwords (I assumed I was just stretching out the muscle). Fast forward to New Years Eve day after my 2nd ride in two days and the calf is still hurting. I happen to notice it is swollen. Wife starts searching the internet saying "you could have a blood clot". I'm like.... nah - its just a muscle. She keeps pestering me and then I call the nurse line. They told me see a doctor as soon as possible and advised urgent care is open 1/2 from 8-8. So I go to the urgent care the next day, walk in and see like 80 people waiting and I'm like "screw this, I'm not waiting around for a muscle ache). On Tuesday morning, I called the doc and got an appointment for the afternoon.

Oh hey - a new paragraph!

The doc looks at it and says: "I really dont' think this is a blood clot, but lets get you an ultrasound just in case". I head over to the imaging place and as the tech leaves, I ask if I can sit up and she says: "I wouldn't if I were you". From there, its back to the doctor immediately, then off to the hospital for tests, then off the the pharmacy so I can pick up the warfarin and the shot thingy (forget the name). 

Bottom line: I waited about 2 weeks with lower leg pain and kept on riding. If the clot had broken loose... 

So... take swollen lower body parts seriously and see the doc! 

My doctor has encouraged me to continue exercising (I swim and bike) but the anti-coagulation center person suggested I wait until my LNI is in therapuetic range. So that is what I'm doing. 

Anyway... sorry if you read all this, but typing it out makes me feel better -- the whole thing has been a surprise and scary thing and depressed me. So glad that I'm not alone in the MTB world and can get back to my passion soon.


----------



## sandyeggo (Mar 6, 2011)

Also - one of the side effects is depression meds. Anybody experience i?. I'm finding myself getting easily frustrated, and extremely emotional (sad) since starting the meds.


----------



## JP Nuts (Jun 21, 2004)

sandyeggo,
My first blood clot years ago caused me to become depressed also. I felt my body let me down. I have since accepted the fact that my body inherited Verdan factor 5 which causes blood clots. I would ask to have my blood checked to find if I have the gene. I have been riding almost a year since starting on coumadin. My only issues so far have been from the cuts and scapes that bleed a bit longer but finally clot. Protect your head from blows as concern is cerebral bleeding.


----------



## sandyeggo (Mar 6, 2011)

JP Nuts said:


> sandyeggo,
> My first blood clot years ago caused me to become depressed also. I felt my body let me down. I have since accepted the fact that my body inherited Verdan factor 5 which causes blood clots. I would ask to have my blood checked to find if I have the gene. I have been riding almost a year since starting on coumadin. My only issues so far have been from the cuts and scapes that bleed a bit longer but finally clot. Protect your head from blows as concern is cerebral bleeding.


Thanks JP. Good to know I'm not alone. I just picked up mountain biking again in April and covered more miles than I ever have, dropped 30 pounds and was feeling good. Now this. Its like all that hard work and my body rewards me with a blood clot! Its been 7 days since I last worked out and its driving me nuts. Looking on the bright side, losing the 30 pounds and doing all that exercise should help me heal faster than if I was still the lazy slug I used to be, right?

Docs say I can exercise but I'm still in too much pain (I'm waiting till my INR gets in the therapuetic range before I ride though). The swelling and pain in my clotted leg is finally starting to feel better today... Only to have my knee on my good leg hurt like hell because I've been favoring. Perfect! To top it off... it has been unseasonably warm here and I'm missing perfect biking weathe.r Oh well -- Gotta keep my head up though - I'll be back riding soon enough.


----------



## sandyeggo (Mar 6, 2011)

JP Nuts said:


> sandyeggo,
> My first blood clot years ago caused me to become depressed also. I felt my body let me down. I have since accepted the fact that my body inherited Verdan factor 5 which causes blood clots. I would ask to have my blood checked to find if I have the gene. I have been riding almost a year since starting on coumadin. My only issues so far have been from the cuts and scapes that bleed a bit longer but finally clot. Protect your head from blows as concern is cerebral bleeding.


I just got my results back from the lab. As it turns out, I'm a lifer as well -- Factor V Leiden for me... Oh well. At least it has been diagnosed, and I'm on the proper medication and shortly back to shape I was before this all started.


----------



## mjh365 (Feb 13, 2012)

I recently was in hospital for a clot in leg.... and was told I can't ride, or do much of anything for months. So, Sandyeggo, I hope you're doing well and riding. It's been two weeks for me, and it's been tough not riding. I went from 4 to 5 days a week down to zero.....


----------



## sandyeggo (Mar 6, 2011)

mjh365 said:


> I recently was in hospital for a clot in leg.... and was told I can't ride, or do much of anything for months. So, Sandyeggo, I hope you're doing well and riding. It's been two weeks for me, and it's been tough not riding. I went from 4 to 5 days a week down to zero.....


Hang in there! I was down for about 2 months -- but not so much because I was told not to -- I was in too much pain with the clot followed by other knee and foot issues back to back to back. The day I was diagnosed I asked the doctor about riding and he said that I could do pretty much whatever I wanted (other than contact sports) as long as I wasn't in pain. He also warned me to make sure I wear a helmet and get checked out after a fall b/c of concerns of internal bleeding due to coumadin.

After those first two months, it was difficult to get back on track and into riding shape -- sitting around and not riding depressed me so I compounded sitting around with eating poorly (still trying to break that habit, lol!). But now I'm back to riding 4-5 times a week and feeling better every day. Don't really notice any side effects with the meds, but I do wear a cool medical bracelet at all times (and by cool, I mean dorky). I also make extra sure my wife knows where I'm at, when I start, and when I finish when I ride alone.

The biggest pain in the arse for me is keeping my INR in the therapeutic levels. After 3 months, I am just now starting on only having to go in on a monthly basis!

I know it sucks but you'll be back at it before you know it. If you have any questions (that aren't questions only doctors should answer), let me know. I'm happy to answer based on my experiences.


----------



## hi desert clyde (Sep 10, 2011)

I tweaked my right knee/calf a bit about a month ago. Walked around with a sore calf (upper behind the knee) for a couple of weeks. I then felt soreness in my groin and went to get it checked out (they sent me home from ER first time around stating that I didn't have "dvt legs"). I actually had a dvt that travelled to my groin from behind my knee. Brutal, thankful that I didn't get a PE from it. 

I was in the hospital for about 5 days getting lovenox shots in the stomach every 12 hours plus starting coumadin. Once I was therapeutic they let me go. I had a follow up with my endovascular guy and to my surprise he said I could ride right away but just don't take any headers and be careful not to get cut up.

I still haven't gone riding yet but think I will soon as I'm going crazy without it.

I had superficial venous thrombosis in 2005 and had both greater saphenous veins ligated. This was my first DVT. I will be on coumadin for 6 months. I'm starting to wonder though if I will be a lifer due to clot history. I was tested for verden factor back in 05 but didn't have it. DVTs are so scary that a person almost wants to be on blood thinners forever just so it doesn't happen again!


----------



## sandyeggo (Mar 6, 2011)

hi desert clyde said:


> I tweaked my right knee/calf a bit about a month ago. Walked around with a sore calf (upper behind the knee) for a couple of weeks. I then felt soreness in my groin and went to get it checked out (they sent me home from ER first time around stating that I didn't have "dvt legs"). I actually had a dvt that travelled to my groin from behind my knee. Brutal, thankful that I didn't get a PE from it.
> 
> I was in the hospital for about 5 days getting lovenox shots in the stomach every 12 hours plus starting coumadin. Once I was therapeutic they let me go. I had a follow up with my endovascular guy and to my surprise he said I could ride right away but just don't take any headers and be careful not to get cut up.
> 
> ...


Glad to hear you got it before you developed a PE. Once I got past the pain of the clot (followed by other knee/foot issues) I got on the bike. I've ridden about 400 miles since the diagnosis. I was worried the first few times I rode but after that I don't even think about it much.

I do where a medical bracelet (that looks like the livestrong bracelet) in case something happens so medical folks know I'm on blood thinner. I also carry a first aid kit in case I get cut (I think a first aid kit is a good thing to have, anyway).

I'm a coumadin lifer. The anti-coag clinic I go to said that they may end up changing the monthly blood testing to 6 months for those that have a history of having a steady number - that sure would be nice. I'm also hoping that they'll develop new meds that isn't as sensitive to changes in diet, medication, etc - more of take and forget it kinda med. ;-)


----------



## mjh365 (Feb 13, 2012)

hi desert clyde said:


> I tweaked my right knee/calf a bit about a month ago. Walked around with a sore calf (upper behind the knee) for a couple of weeks. I then felt soreness in my groin and went to get it checked out (they sent me home from ER first time around stating that I didn't have "dvt legs"). I actually had a dvt that travelled to my groin from behind my knee. Brutal, thankful that I didn't get a PE from it.
> 
> I was in the hospital for about 5 days getting lovenox shots in the stomach every 12 hours plus starting coumadin. Once I was therapeutic they let me go. I had a follow up with my endovascular guy and to my surprise he said I could ride right away but just don't take any headers and be careful not to get cut up.
> 
> ...


I'm glad you're ok, and that this was caught before it became a PE or worse. My 'episode' started on March 21st. I went on my first ride the first week in May. You just need to be careful and not take too many risks. But riding will be fine. I am on Lovenox, I had a bad reaction to the Coumadin that put me in the Hospital. So injections for me twice a day, at least, until November. They still haven't figured out what has caused my clots. If you have the ok, get back out there and ride, it will make you feel much better (just be careful)...


----------



## JP Nuts (Jun 21, 2004)

OK. So I have been on Coumadin now for 16 months. I have an insurance provided home monitoring device that I test my INR weekly. I have noticed fluctuations in results that have neccessitated adjusting my dosage. I had a 5.9 value that took several weeks to get down. A monthly check would not have allowed a timely response.
Bleeding out from a serious cut is an issue but most importantly is a blow to the head w/ cranial bleeding. A helmet will keep the bones contained but it does not stop the brain from hitting the inside of the cranium. 
I sport numerous scratches on my fore arms from sharp objects. Blood flows for a bit until the wound clots w/o my assistance.
I beefed up my first aid kit but have used it more on other riders than me. I discovered that there are large parts of my body that I can not bandage.
I wear a RoadID that ties into my medica records.
Exercise restraint when pushing your ability. I am enjoying a slower pace.


----------



## hi desert clyde (Sep 10, 2011)

Thanks to everyone for sharing your experiences. It certainly helps to know there are others out there that work through this every day. I hope to start pedaling soon. Coumadin is kinda makin me feel "blah". My INR was 4 today so they had me skip a dose then drop from 7 down to 5mg thru Friday and then go from there. 

JP Nuts: I hear you on exercising restraint. I'm all about slower paces and taking it all in, especially now at the ripe old age of 39!


----------



## sandyeggo (Mar 6, 2011)

I should add that my doctor encouraged me to get back to exercising as soon as I was no longer in pain and I specifically asked about my favorite exercise - mountain biking. He said that is fine but if I have a wreck to get checked out (even if I don't think it was severe) to make sure I don't have any internal bleeding issues. With something like this, you should definitely talk to your doctor before exercising. 

My doc did say no more football for me which is a shame b/c at 5'7, no running speed, no ability to tackle, and 41 years of age I was planning on giving it a go on trying out for a professional football team. That dream has been crushed... I wonder if the doctor would approve Rugby...


----------



## hi desert clyde (Sep 10, 2011)

crawled on and rode around the block. It felt pretty great. Definitely have that dead leg feel a bit in the clotty leg but other than that can't complain. My back pain that I was attributing to the coumadin has subsided substantially. You know I thought about it awhile and realize that mountain biking is kind of a brave crazy thing to do while all thinned out. The doc may as well approve rugby, huh?

Cant wait to try again tomorrow.


----------



## BigE610 (Oct 24, 2007)

glad to find this thread. pretty down right now. I broke my foot a month ago and it hasnt been healing all that well. then monday i got my cast wet and went in to get a new one. I told the doc my calf is hurting and they didnt think it was a clot but wanted to check to make sure. well it was and now im starting my blood therapy. Its nice to see that im not alone. scary stuff but im glad i got my cast wet. A DVT sucks but PE sounds horrible. hopefully i wont be a lifer but if i am at least i know i can ride.


----------



## hi desert clyde (Sep 10, 2011)

BigE610, 
Dont be down. Everything will work itself out. I had to switch from warfarin to brand name coumadin due to an allergy to the generic but other than that, I've been good. I've put down quite a few miles since my last post above and feel pretty good. I'm just taking it slow and doing mostly flat lander stuff but its working ok. Did your doc OK riding again once the foot heals? How long are you going to be on thinners for? 
The biggest thing I've learned so far is diet consistency with the vitamin K thing while on thinners. I was trying to avoid it completely at first but realized the error of my ways.


----------



## Colorado_Stevo (Jul 12, 2014)

I'm really glad I found this forum also. I've been feeling pretty bummed out about after being told I shouldn't do any activities where I could receive a head injury. I didn't have a DVT but I did suffer a major "lung attack" with multiple PEs. I ended up with 10 large bold clots in my lungs and dang near lost my life. The Hemotologist was totally bewildered by the whole thing and basically couldn't explain how I didn't die. After genetic testing it turns out I have 4 genetic abnormalities: protein C & S deficiencies, elevated homocysteine level + MTHFR. Long story short, my blood persistently wants to clot. Therefore I'm on Coumadin and Folic acid. Well, it's been 3 months since the event, and I feel perfectly fine other than getting winded much faster than I used to and a little bit of weezing if I get really winded. I live in Colorado and love to bike, hike, snowboard, etc. I was thinking I wouldn't be allowed to ride ever again, but now I'm thinking I need to get another doctors opinion and see what they say. I think road riding is out because it's so easy to get hit by a careless driver, but I would love to get back on the trail again .


JP Nuts said:


> sandyeggo,
> My first blood clot years ago caused me to become depressed also. I felt my body let me down. I have since accepted the fact that my body inherited Verdan factor 5 which causes blood clots. I would ask to have my blood checked to find if I have the gene. I have been riding almost a year since starting on coumadin. My only issues so far have been from the cuts and scapes that bleed a bit longer but finally clot. Protect your head from blows as concern is cerebral bleeding.


----------



## JP Nuts (Jun 21, 2004)

Update 3 years later: I am still riding same exposure to risk. No body slam falls, only scrapes and scratches that bleed and are thinned w/ sweat riding back here in the Appalachians makes for lots of blood red. They clot soon enough for me not to be a worry. Successful rotator tear arthroscopy repair.


----------



## hi desert clyde (Sep 10, 2011)

Update (2 years after dvt) same same, warfarin for life and riding about 100-150
Miles a week. I figure life is too short to just give up riding or whatever, doc has 
Been supportive and so has wife. I am routinely riding tough trails and commuting to work as well.
I test my INR at home which is extremely helpful becuz I can test once a week which, for me, leads to more stable inr's. I take some pretty good falls including a recent tubeless blowout. Bruise a bit more and bleed a little longer but other than that..... Vaya con Dios.
Peace be with you.


----------



## 11053 (Sep 19, 2009)

Been riding on anticoagulants for 6+ years now.
Maintaining a stable INR in therapeutic range hasn't been too much of a hassle.
I ride a lot of DH.
A big crash was inevitable and it finally happened.
20+ mph in the air over a rock garden and clipped a pedal on a rock just after the front wheel touched down.
Cracked ribs, banged head, impact to shoulder that would likley have separated it if it hadn't already had a grade 3 separation.
INR was 2.7 the day of the crash according to the home monitor.
Didn't wake up dead the next day.
In a way the crash was a good thing. I don't feel quite as fragile. Maybe I got lucky, but maybe riding aggressively with an INR in the 2.5-3 range isn't as dangerous as some docs make it out to be.
Who knows?


----------



## hi desert clyde (Sep 10, 2011)

@11053,
Ridiculous man! That is crazy, but awesome! I agree with the INR thing. Of course everyone's different and there could be a whole plethora of factors but INR's between 2.5 and 3.5 aren't too dangerous in my mind. Most mountain bikers are in some sort of shape and that has a lot to do with it. The vast majority of folks on warfarin are not in riding shape and many are well over 65-70 years of age. Doctors base their logic and information they provide on statistics and limited experience through their own practice. Just my opinion and I don't know what the hell I'm talking about most of the time anyways. Crazy story but cool, it's motivating me to leave work early and go banzai.


----------



## pedaler845 (Jul 18, 2004)

I'm a new member to the Warfarin club, resurrecting this thread as I'm interested in hearing about riding & risk.
I ride techy x/c and Ive been limiting my risk by not doing big features.


----------



## pedaler845 (Jul 18, 2004)

I havent heard of liver & kidney problems due to Warfarin. Any leads that I can research?


----------



## hi desert clyde (Sep 10, 2011)

pedaler845 said:


> I'm a new member to the Warfarin club, resurrecting this thread as I'm interested in hearing about riding & risk.
> I ride techy x/c and Ive been limiting my risk by not doing big features.


Well, welcome to the club, sorry to hear. I switched to Eliquis a couple of years back and I like it better because I can eat as much vitamin K as I want and no more testing the INR! As far as riding goes, my take is that there is just as much risk as anything else. Riding bikes is just inherently risky! I don't even think about it anymore.

As far as bleeding goes, I have definitely taken my lumps since being on blood thinners and have never had an issue. A little over a year ago I decided to really put it to the test when I inadvertently put a chainsaw in my left foot (right by the ankle). I just elevated, compressed and had my wife drive me out of the Green Mountains in Vermont to the nearest place where I could catch an ambulance ride to the hospital. I didn't bleed out from that so I figured all's well.

From what I understand, a lot of concern with internal bleeds or brain bleeds depends on overall health and most definitely age.

coumadin shouldn't really affect your kidneys or liver but it is a poison of sorts so just definitely drink lots of water.


----------



## pedaler845 (Jul 18, 2004)

Thanks for sharing your insight to our tribulations. I spent quite a few VT summers based in Rochester, and now I visit via the VTMTB fest. The chainsaw is quite a testimony to Eliquis & yourself.

If there's any insight as to a better thinner than Coumadin/Warfarin I'd like to hear.


----------



## hi desert clyde (Sep 10, 2011)

pedaler845 said:


> Thanks for sharing your insight to our tribulations. I spent quite a few VT summers based in Rochester, and now I visit via the VTMTB fest. The chainsaw is quite a testimony to Eliquis & yourself.
> 
> If there's any insight as to a better thinner than Coumadin/Warfarin I'd like to hear.


Rochester is pretty killer, I used to reside in North Chittenden, at the base of Mt. Nickwackett. I really enjoyed pedaling those trails, it reminded me of the Moon of Endor or something. I only made it to Ascutney one time, pretty cool scene. Glad to be back in the desert though, it is where I belong.

Coumadin/Warfarin is rat poison essentially, the other "newer" blood thinners on the market "anticoagulate" in a different way and are considered to be as safe without the diet restrictions and the constant testing. Hopefully your INR stays level, I've heard that some people have no issue. For me, my INR would change if someone looked at me wrong. This was very frustrating!

The only perceived drawbacks to Eliquis is that there is no antidote for it (the only good thing coumadin has going for it) and there is no generic. Eliquis, from what I have gathered, is the safest of the 3 newest anticoagulants.


----------



## chazpat (Sep 23, 2006)

I went to see a vascular surgeon just last week due to getting a superficial blood clot recently. They normally are not a big deal but since I am on Warfarin due to having a vitamin S deficiency and two dvts, I got it checked out and the doctor set me up for the consolation with that surgeon. Fortunately, he says I don't need surgery but talking with him did give me a reminder that I need to be careful (I didn't tell him I mountain bike). It does seem that the concern is more about internal bleeding. 

I've made a couple of changes recently that I think make me safer. The first was switching to flat pedals after having ridden clipless for over a decade. Though obviously I was very familiar with clipping out, I just felt like the occasional failure to do so might eventually lead up to a bad crash at some point. The second thing was getting a dropper post. Getting the weight lower when descending really does make me feel safer. Of course, I think this has also lead me to riding a bit faster so that might erase some of the safer aspect!

My levels stay within range without adjusting my dosage, even though I don't think I am very consistent with my vitamin K intake. I've always taken Warfarin, it's cheap and been around for a good while.


----------



## hi desert clyde (Sep 10, 2011)

dialed in bro. Sounds like you definitely know the deal for sure. flat pedals and a dropper are great adjustments to make. Dually noted!


----------



## Staktup (Jan 21, 2016)

Vitamin K is not a true antidote for warfarin; common misconception. It just allows the liver to start producing Factors II, VII, IX, X, and Proteins C&S. It could take a full day to restore these clotting factors, while the newer agents (Factor Xa inhibitors and thrombin inhibitors) will have half-lives that will allow the body to eliminate the drugs within or even sooner than "reversed warfarin".

Intracranial hemorrhage is the biggest risk, so buy the best helmet you can. None of the agents have been studied head to head, and all of them had different patient populations and trial designs, so I wouldn't trust any doctor that says one if more effective or safer than the other, especially if that agent was studied in a less sick and younger group of patients with fewer risk factor, and excluded risky patient types such as previous surgery, trauma, cancer, etc..

Post-marketing data is good to know how well the agent performs in real-life vs. a sanitary and highly-monitored Phase 3 trial. Some agents show more bleeding than others, other show greater risk of strokes / clots than others that may be dose-dependent. Once daily regimens seems to be the most popular choice.

If I had Afib and needed lifelong anticoagulation, I would weigh the risks of getting the Watchman Left Atrial Appendage Occlusion device put it, vs. staying on a blood thinner for life. The Factor Xa inhibitors had areversal agent sent back twice now by the FDA because the company that makes it is sloppy and got greedy & careless with their submission. So Pradaxa (dabigatran) is the only agent with a true, directly reversible monoclonal expensive antibody for this direct thrombin agent that not all hospitals carry, but the GI side effects and bleeding are what you may have to deal with to be on it- and most of it is metabolized through the kidneys which can be dangerous with combining other medicines- and alcohol.


----------



## F.N.G (Jan 6, 2008)

pedaler845 said:


> I'm a new member to the Warfarin club, resurrecting this thread as I'm interested in hearing about riding & risk.
> I ride techy x/c and Ive been limiting my risk by not doing big features.


I am resurrecting Pradaxa again. Especially if you do dangerous activities. It has a true reversal agent out called Praxbind. It is stocked in hospitals. It is for a person who encounters a life threatening bleed (like hematoma) or in need of emergency surgery. If you are on Pradaxa and have a life threatening bleed or need to have emergency surgery, the ER will inject you with Praxbind and within 3 minutes (THREE) Pradaxa is shut off for 12 hrs and out of your system. Go to Praxbind.com and click i am a healthcare professional. Then go to find a hospital and type your zip code. It will tell you every hospital in that zip that carries it....if they don't carry it at your hospital, then it can't help you.


----------



## 11053 (Sep 19, 2009)

Checking back in after several years without an update.
Still rolling on Warfarin/Coumadin-been about 10 years now.
Continue to ride as often as possible-almost daily.
Summertime DH/bike park still going strong- almost daily DH laps when the park is open.
Had a few more clot + PE episodes(anti-coagulation does not eliminate my clotting risk, but does appear to diminish the frequency of events).
A few more hard crashes between my last update and now- lots of blood, significant bruising, some helmeted head + ground contact as well= all good so far.
Have had to bump my warfarin dosage up by .5 in the past year to maintain an INR of 2-3.
Key thing for me is still the home INR monitor. I can check INR and adjust dose to get things within range in about 3 days give or take.
The whole thing is an adventure.
Being on anticoagulants hasn't altered my life for the worse. Living with a potentially fatal disease/condition and the significant wear and tear it inflicts on the body is what has changed me physically and mentally.
Interesting thing is that I am now a better and faster(DH) rider than I have ever been. I still continue to make gains in the DH skills and speed departments. I also consider myself to be more cautious and measured when riding due to the warfarin, but it hasn't slowed me down.
Given the alternatives, a lifetime on warfarin is a great thing(so far).


----------



## pedaler845 (Jul 18, 2004)

I've been on Warfarin for 6 months steady now, no complications. No bad injuries yet. I'm still riding hard, but using caution.
My hematologist doesn know why a healthy active 49 y/o would get a DVT, except my Homocysteine levels are very high. I've begun looking into & taking Methylated B vitamins for this.
Anyone have insight on this?


----------



## Staktup (Jan 21, 2016)

11053 said:


> Checking back in after several years without an update.
> Still rolling on Warfarin/Coumadin-been about 10 years now.
> Continue to ride as often as possible-almost daily.
> Summertime DH/bike park still going strong- almost daily DH laps when the park is open.
> ...


Dude, you are very brave and lucky. The good news is that very hospital should have K-CENTRA, an activated 4 factor activated prothrombin complex concentrate to rapidly reverse warfarin in case you have head trauma and an intracranial hemorrhage. There ws a recent recall of Roche's INR test strips, and another brand had the same issue a few years back so beware.

Direct oral anticoagulants like Xarelto, Eliquis, Savaysa, and Pradaxa all have lower rates of ICH and fatal bleeding and now te factor Xa inhibitors (the first 2 I listed) now have direct versal agent called Andexxa. However, only large trauma centers and academic institutions have it stocked for now, but availability should expand by January. 4 factor aPCC can be used in lieu and is a recommendation for these agents but not a official FDA indication.


----------



## Staktup (Jan 21, 2016)

pedaler845 said:


> I've been on Warfarin for 6 months steady now, no complications. No bad injuries yet. I'm still riding hard, but using caution.
> My hematologist doesn know why a healthy active 49 y/o would get a DVT, except my Homocysteine levels are very high. I've begun looking into & taking Methylated B vitamins for this.
> Anyone have insight on this?


Sorry to hear you are giong through this. I am puzzled why clinicians are using warfarin for treatment of VTE unless the patient has a clinical or financial reason not to be on a factor Xa inhibitor. One such agent is now recommended by both the Int'l Society of Thrombosis and Hemostasis and Nat'l cancer Care Network over standard of care (low-molecular weight heparain bridge to warfarin). Two had a decent number of patients with cancer studied and compared to a LMWH / warfarin, and 2 also looked at long-term treatment vs. aspirin which is a guideline-recommended approach.

Major bleeding, ICH, and fatal bleeds are lower based on prosepctive clinical trials than standard of care (SOC), and the dosing can be reduced after 6 months with one such agent compared to aspirin. Warfarin interacts with over 700 medicines and vitamin-k containing foods. Only patients with mechanical heart valves or certain hematologic malignancies are strong warfarin candidates.


----------



## GunghoCrom (Sep 24, 2018)

Victim of major clot in 2012 had filter removed two weeks ago. I'm on zyrtec now.. Piece of free is still inside of me like a shrapnel


----------



## Staktup (Jan 21, 2016)

Zyrtec? That’s an antihistamine for seasonal allergies and rashes... what’s the theory behind it?


----------



## Psychlist73 (Nov 19, 2018)

I'm new to the MTBR forum and was very surprised to find this thread. Three and a half years ago at the age of 42 I developed a blood clot in my eye and was found to have both the Prothrombin mutation and Factor V Leiden. After trying out a couple of drugs that made me bruise like a peach, we settled on Xarelto. Even knowing that there was no reversal agents, my doctor was cool with me continuing both MTB and "non-contact" ice hockey and I bought two very expensive helmets. 
The worry of having a serious injury was always in the back of my mind, but truthfully it did not alter my riding. Of course I suffered some falls and some nasty bruises along the way, but I never bled excessively and was pretty calm about it. Then this past July I went over the bars on a downhill section of a local trail and landed on my right arm and elbow. I broke my humerus just below the ball and suffered a partial tear of my rotator cuff. The bruising was very bad and very painful for a long-time. I was checked out by my hematologist and he did not think I had to worry about internal bleeding but I did get pretty bad flu-like symptoms lasting for about four days a week after the crash. I'm not sure if it was related or if it was just coincidence. 
I returned to riding (but not hockey) about a month ago and have been much more cautious. I'm convinced that the recovery from the injury took longer due to the blood thinner and I never want to go through that pain again.
On the plus side, I just bought my first full-suspension bike! They are safer, right?


__
Sensitive content, not recommended for those under 18
Show Content


----------



## Staktup (Jan 21, 2016)

https://www.acc.org/latest-in-cardiology/articles/2019/01/28/12/56/updated-afib-guidelines-recommend-noacs/?utm_medium=social&utm_source=twitter_post&utm_campaign=twitter_postOuch, you are brave. You should be happy to know that Portola received FDA approval on New Year's Day to manufacture their reversal agent Andexxa for life-threatening bleeding when a patient is on Xarelto or Eliquis, overseas in Spain. This means mass distribution to any hospital now so contact your local hospital to see if they have it stocked or where the nearest hospital is (large academic w/ or w/o Trauma unit is most likely).

Recently the ACC published new guidelines for AF anticoagulation and warfarin (Counadin) is now second-line to NOACs/DOACs:


----------



## Staktup (Jan 21, 2016)

Also, Xarelto is recommended by the Nat’l Cancer Care Network AND Int’l Sco. of Thrombosis and Hemostasis as 1st line w/o qualifiers to treat VTE
in patients with cancer. 

Warfarin does have a reversal agent thet works
immediately (KCENTRA, an activated 4-factor Prothrombin Complex Concentrate) that every hospital should have since it is as
cheap as Pradaxa’s reversal agent Praxbind. 

I list this i fo because you should be able to know the risks of riding when anticoagulated, but should feel somewhat reassured if you get FUBAR.


----------

