Anyone riding with a coagulopathy?

[FlashGordon]

Obviously those on blood thinners cannot ride.

What about people with a bleeding disorder like Von Willebrands, Hemophillia or a factor deficiency?

How about if you’re on the opposite end with a clotting disorder? Are you under restriction?

Afraid to ask the hematologist just yet because I’m worried it will be a big fat NO, so I’m coming to the next obvious solution, asking random people on the internet. Just wanted to add, not looking for medical advice, just curious how limited activities may be if you have something like this going on.

[PalominoMorgan]

No advice on this particular topic, but an sympathize on the seeking advice on the internet from familiar strangers. Going through a lot of the same issues right now myself.

Of course, my PCP basically told me to go ride yesterday. I explained the horses were in TN and she told me I had to know SOMEONE who had a horse I could ride. Hint hint. I probably should go ride before a doctor figures out what is going on and bans me from riding altogether.

Good luck getting your answer (or the answer you want.)

[FlashGordon]

Oh PM I think of you often and hope you are feeling ok. You’ve been through the wringer!

Was talking to hubby about it last night and his theory was I could get in an accident on the way to the barn, fall down the stairs, you know all those random things. So why not ride?

So I’ll keep riding until I get the nerve to ask and someone tells me not too. And even then, I might keep riding…!

After 8 years of random and seemingly unrelated health issues the hematologist thinks they are in fact related and misdiagnosed. While I really didn’t like being an “interesting case” I appreciate her willingness to get to the bottom of it all.

The good news is I feel great so that is all that matters, IMO!

Maybe I can just use this as an excuse to buy a really nice, broke horse.

[HOOF123]

BUMP PLEASE…anyone else - very informative - horsewomen and horsemen…

[nhhaflngr]

blood thinners

""Obviously those on blood thinners cannot ride. “”

Well, I would have a sorry life if this were true!.

I have been on warfarin for 23 yrs now, as preventive treatment for lupus antiphospholipid disorder (after having passed clots thru my lungs and kidneys at the age of 28).

I have kept on riding for that entire time, with my doctor’s blessing…her understanding that this was/is a quality of life issue with me. Yes, I have had several hospitalizations in that time, but none to date were horse related.

As my joints are having more lupus related issues, I am now driving my horse when not feeling up to a ride.

Every step I take in a day is taking a chance for some sort of accident causing a bleed, riding and driving are pleasures I won’t give up until they have to pry to reins out of my hands!!!

Best Regards -
–nhhaflngr.
–here in NH, we are actually seeing some sun today!!

[FlashGordon]

Hooray NH that is just the kind of story I want to hear.

I’m lupus anticoagulant positive but things have gotten more complicated according to recent bloodwork, which also now suggests a bleeding problem. I guess it is possible to have both hypercoagulation and hypocoagulation factors though unusual, and my doc is not sure yet why that is happening. Frankly this is all over my head.

I just got back to riding after 18 months off to have my son so the high I felt swinging a leg over last week was dampened by this news.

But as my GP said, I didn’t die during childbirth last year so alas it can’t be that bad!!

BTW I love Haflingers!

[HOOF123]

I can not type so bear with me - also to let you know serena williams had a blot clot that also could have ended her life that she had being very active i think her lung -also if you fall or have a injury sweeling of the leg watch out horse related or other bumps - bruses- that won,t quit should be directed to your doctor this stuff is serious- all horsewomen and walks of life-horsemen- anyone else affected or know one - just passing information along-:)hoof123

[nhhaflngr]

FlashGordon and Hoof123 -
My symptoms in my early 20’s started out with bleeding - dx at that time was ITP (Idiopathic Thrombocytopenic Purpura) and tx was heavy dose steroids.
A couple years later I ended up hospitalized for 28 days (tested for everything imaginable and isolated for possible TB!!), end dx was (and still remains) clots caused by lupus anticoag, again tx was steroids. Since then (1988) on warfarin. HAd a DVT in left leg in 2004, full hematology and lupus specialists work up, ended up increasing the dosage of warfarin (now aim to run 3.0-4.0 INR), and added Plaquenil.
Since then all is good, but I obviously bruise very easily and wear a helmet always, just try to use common sense,and ride a shorter horse!!!
Feel free to PM me. My experience is that the lupus battle gets easier once it is correctly diagnosed and right specialists are involved.
–nhhaflngr

[FlashGordon]

Thanks so much for sharing, NH. I had colitis and severe GI bleeding for 9 months in 2008. It was followed by a clot in my leg and pericardial effusion that winter.

I had several miscarriages about 6-7 years ago and subsequent infertility, but unexpectedly (!) became pregnant with my son in 2009. During the pregnancy I had some cardiac complications and ended up on bedrest for the last trimester.

Since his birth I have felt pretty good, but my doctor started running routine bloodwork recently and got some unusual results, and things have snowballed from there. No one previously connected the dots, and really we all just thought these things were random bad luck but the hematologist seemed 100% certain they are all related.

At this point I’d be happy for a diagnosis only so my health can be managed as best as possible, and I can go on having fun with my kids and horses!!!

[caffeinated]

@FlashGordon;5533176

Obviously those on blood thinners cannot ride.

I just spent 6 months on blood thinners and continued to ride. I wore an impact vest, and only rode when there were people in the immediate area in case of a fall. But all my doctors said it was fine to ride (but if I fell, I would have had to go to the ER to get checked for bleeding).

(I had a PE last fall. And it turns out am Factor V Leiden +, so much more likely than most to clot. If I have another clot of any type I may have to stay on warfarin permanently, and no way would I stop riding permanently! haha!)

[Midwest_girl_in_an_E]

I also am Favtor V Leiden positive (heterozygous). I was diagnosed almost 4 years ago (at the age of 26) and have since had three bouts of superficial thrombophlebitis. Luckily I’ve so far avoided a DVT.

I take a baby aspirin every day. I refused to be put on coumadin at such a young age; the increasing risk of hemorrhage was not worth it to me. I didn’t ride while being treated for my active clots, but wasn’t otherwise told not to ride. To me there are plenty of other things in my life that are much more high risk (like standing at my job for hours at a time). However, were I taking a more agressive blood thinner my line of thinking would probably be different.

But it wasn’t fun explaining to my SO this winter that when the weanling pony kicked my in the hip and gave me a beautiful bruise that I wasn’t going to die in my sleep from a PE. It was just easier to take the ibuprofen to make him feel better.

[caffeinated]

@Midwest girl in an East coast world;5533721

I also am Favtor V Leiden positive (heterozygous). I was diagnosed almost 4 years ago (at the age of 26) and have since had three bouts of superficial thrombophlebitis. Luckily I’ve so far avoided a DVT.

I take a baby aspirin every day.

What I was told was that taking a baby aspirin would not be helpful for clots from having factor v leiden - that the clots prevented by aspirin therapy form by different means than the clots I was likely (or “more likely than average”) to get from having FVL. May want to check on that.

[grayarabpony]

Flash I don’t mean to be redundant as you’ve probably been warned about this already, but if you’re on warfarin be sure and get your levels checked regularly and be careful about what you eat. And you usually can eat those certain foods you’re supposed to be careful about, as long as you’re consistent. Where people get into the most problems is changing their diet seasonally and not adjusting their medication along with it.

[FlashGordon]

Grayarabpony that is a good point, I had no idea that certain veggies and things could be an issue.

I’m also glad to hear that people are out there riding and still doing the horse thing. Is it messed up that all I’ve been thinking is OMG what if I cannot ride?!

[caffeinated]

@FlashGordon;5533927

Is it messed up that all I’ve been thinking is OMG what if I cannot ride?!

nah, that was the first thing I asked about when they discharged me. hehe.

Also, in addition to high vitamin K veggies - you can also get a hefty fluctuation in clotting times from other stuff. I got sick and lost my appetite for a few days, and that week my INR went through the roof.

[Midwest_girl_in_an_E]

Caffeinated: You’re right, aspirin prevents platelet aggregation–so it’s not typically a good choice for coagulopathy folks as DVTs don’t form by this mechanism. However, since my issues to this point haven’t involved DVTs and I wasn’t willing to start a long term regimen of coumadin or warfarin in my late 20s, we decided that low-does aspirin (as well as changing my work habits and wearing stockings everyday) would provide some anti-imflammatory benefit to help prevent my issues. Personally, the long term risk of hemorrhage that comes with taking these drugs over a period of time wasn’t something I wanted to deal with yet. But I think that it’s important that each patient think about the risks and how they impact their lives individually.

And I’m glad you all are discussing the diet issues…this was something I had to tell my mother as she started her coumadin therapy because it just wasn’t stressed to her enough by her physicians!

[caffeinated]

@Midwest girl in an East coast world;5534079

And I’m glad you all are discussing the diet issues…this was something I had to tell my mother as she started her coumadin therapy because it just wasn’t stressed to her enough by her physicians!

You’d be surprised what isn’t stressed. My doctors were awesome, up on the latest research and very informative… shortly after I got home I “ran into” an internet friend who had had a DVT and was on lovenox and coumadin (massive doses because her INR wasn’t coming up), and also was taking a lot of ibuprofen and aspirin for pain concurrently. Not only had they not warned her about combining coumadin with those drugs, but apparently one doctor had written the prescription for the 800 mg ibuprofen doses she was taking.

um… yeah.

Hopefully I get to stay off the coumadin - but I’m pretty terrified I’ll have another episode. They think it was from BCPs + FVL, but I just heard my male cousin, who is 28, just had a DVT. And as everyone in that side of the family has had issues, including my grandfather’s major strokes, I’m having trouble not living in fear.

[sdlbredfan]

[QUOTE=FlashGordon;5533176]
Obviously those on blood thinners cannot ride.

What about people with a bleeding disorder like Von Willebrands, Hemophillia or a factor deficiency?

How about if you’re on the opposite end with a clotting disorder? Are you under restriction?

Afraid to ask the hematologist just yet because I’m worried it will be a big fat NO, so I’m coming to the next obvious solution, asking random people on the internet. Just wanted to add, not looking for medical advice, just curious how limited activities may be if you have something like this going on.[/QUOTE]

The first statement is untrue. Those on anticoagulation therapy simply must monitor their INR to stay in the appropriate range. BTDT, and easy to do nowadays, home monitoring devices being quite simple to use.

Anyone not currently doing home monitoring, do a search engine search on Coaguchek XS and that should lead you to info on how to get signed up for that. Basically you and your Doctor fill it out, Doctor faxes it to the company that provides the monitoring service (you call in your test results) and tells that company what your target/acceptable INR range is.

There is a new anticoagulant type, currently being used for those with atrial fibrillation, called dabigatran or brand name Pradaxa. That drug has a different mode of action, does not affect INR, so may be very useful for other than AF but I think Doctors are currently only Rxing it for AF.

There has been some very interesting stuff recently in www.sciencedaily.com about anticoagulants, and one gem I found is that blunt injury to the head is more likely to cause intracranial hemorrhage if on warfarin, than in anyone not on it. So, that underscores the importance of a helmet.

[amastrike]

People on coumadin: Ask your doctor about Prodaxa! It’s a new drug (released a few months ago) that requires NO monitoring. I think it’s only approved for afib, but it’s worth a shot. The company does coupon cards and stuff to bring the copays down.

Flash, I think at some point, you have to make a choice between being alive and having a life. Your husband is right, anything can kill you, so you might as well enjoy yourself.

[HOOF123]

IF you are on warfarin you are not supposed to take aspirin,ibuprofen,etc ,without doctors consent -tylenol is best so i hear and also all pair the counter and narcotics [ don,t know them ] all have aspirin …