Changing jobs = changing meds even if the new meds are worse because insurance company has to save $$.
The insurance company wants me to switch from Eliquis to Xarelto, with the latter having
The patients treated with Xarelto experienced more bleeding—both major and minor.
Yeah not cool with that. Even more so that I use an InReach on most of my rides because I’m out of cell coverage. If I crash and start bleeding while out of cell coverage, yeah not good. Maybe I tell the insurance company that their choice could lead to a helicopter medi-vac. That might change their tune.
Update: clot was cleared, hematologist took me off Eliquis prior to Unbound and everything was fine. WAS fine. Started to have the same feeling in my right calf (which had the DVT before) and will have an ultrasound early next week to give it a look see.
Did switch from my for profit health care system to the Veteran’s Administration. Here in NorCal they are staffed by Stanford. VA is “in network” for my employer and they are more concerned with outcomes than billing. Good example is my new GP is very much on board with me continuing to cycle. “Way too many benefits to stop.”
All Clear! Even got a complement that my veins look really good.
Direction now is compression socks when I’m not going to be able to getup and walk around (sleeping, flying, long drives) and 81mg asprin at least 2x a day.
My risk isn’t gone, but can manage things to the point where it’s keeping things clear rather than having to clear a clot.
Boo, just received diagnosis that I have DVT again in a nearly identical spot in my left calf 2 years since my only previous occurrence. Last time it was after knee surgery so there was a clear explanation, this one seems out of the blue so presumably it’s genetic.
Guess I’ll be back on the Xarelto bandwagon again.
Were you tested for genetic factors like Factor V Leiden after your previous DVT? Sorry to hear about the recurrence.
Also check and see if there is a reversal agent for Xarelto. My doc put me on Eliquis specifically because there was one for it.
I tried really hard to go this route, but the issue (as I understand it) is that baby aspirin affects different proteins than other blood thinners. It is effective for thinning the blood to prevent arterial clots, but not venous clots. So it would not be much help here.
Side note - after 14 years on thinners, my hematologist left the practice he was in and they assigned me a new one. So for my annual appointment I walked her through my history, etc.
Given my active lifestyle, being on thinners is obviously a risk and every year I ask “are you gonna take me off these yet?” The new doc agreed to cut my dosage in half (down to 2.5mg Eliquis, twice daily). So my risk exposure in the event of a crash is somewhat lower now, but my daily risk factor for a recurrent DVT is slightly higher. It is all a game of balance.
I’m no hematologist but i do have Linden and my Doc said that Linden plus COVID isn’t an outlandish guess. No other symptoms but the virus plus genetics was a “yeah could be, but at this point hard to prove and doesn’t change the treatment.”
Asprin makes the platelets less sticky and has a crazy long half life, hence the low dose. It as noted, doesn’t do diddly for breaking up clots at any rate.
I was on Eliquis, and if I had to go back I’d 100% try to keep it as low as possible. Definitely not looking to have a brain bleed if I crashed.
I wasn’t referred to a hematologist after my first occurrence since it thought it was a complication of my knee surgery and I had no prior history but I expect I’ll get referred now.
While I won’t be doing much mountain biking over the winter, I wouldn’t accept any treatment that would require me to stop mountain biking outright. That will be one of my major considerations for longer term treatment when I get that far in discussions with doctors.
My first Hematologist (civilian) wanted me to stop riding. My second one (Veteran’s Admin) said “No way! 100% keep riding as it has way more benefits than liabilities. Let’s put you on baby asprin and track things.”
Wow, that surprises me. When I had mine, my docs insisted that I get the genetic testing, even though it seemed very clear what the proximate cause of the DVT was…i had been in a walking boot for ~8 weeks and had that bad boy strapped down tight. I literally said “Why are we bothering with this…it is clear what the cause of the clot was. I’m 43 (at the time) and have never had any clotting issues. It was obviously the boot!” They basically said “well we already drew the blood so we are doing the testing. We need to verify what the actual cause was.”
Turns out the boot was only the trigger. The cause was my Factor V.
Keep us updated on what happens!
You should still be able to maintain all your normal activities, although perhaps slightly modified. I basically stopped racing crits and, for a time, turned to triathlon. I’m now mostly just gravel racing. Still do group rides, etc. as I did before.
I would strongly advise easing up on descents on your MTB, though…I always thought the major cause for concern when riding on thinners was essentially bleeding out in the event of a bad crash. But a nurse later explained that the major concern is a major blow to the head causing a cerebral bleed.
I got lucky in 2021 when I did The Rift…had a high-speed crash coming down a long descent and concussed myself (had double vision when I got up that lasted for ~40 minutes). That could have had a much worse ending in hindsight.
Makes sense of course. I think I should have done the Factor V testing on my first, I think it was a miss when my original primary care doc left the family practice and I was handed off to another. I have a referral the hematologist this time though and will complete the testing.
My situation so far is not so bad. Turns out it’s not full blown DVT because the clot is in a superficial vein that does not have high risk factor for PE because it’s not on the main artery line to the lungs. For this type of clot you aren’t required to go on thinners unless it proceeds to a full blown DVT which it does in 30% of cases. Starting anticoagulants sooner doesn’t appear to have statistically significant effect on whether it progresses to full DVT or not.
That said, my primary care doc is advising I start a treatment of Xarelto and I have the prescription filled and in hand, but so far am just sticking with low dose aspirin, compression stockings, plenty of hydration, etc. Pain has gone down considerably since onset on Wednesday and I was able to do a 1 hour Z1 spin today with no real pain. It hurts to walk still some, but it feels worse the less I move.
Given how the next week or so goes this post will either serve as a warning of exactly what not to do, or as an example that the less severe clots are not something that needs to have a big multi-month effect on your training. I won’t have access to a bike for about a week starting in a few days but I plan to continue to do easy rides until then and try some sweet spot rides after that, which will be about 2 weeks since onset.
I want to be very clear that I’m not attempting to offer medical advice for anyone else. I’m also not choosing to ignore the advice of my doctor. My current situation is that is that I have a small clot in my gastrocnemius vein, a superficial vein that is considered lower risk (but clearly not no-risk).
There is not an abundance of research for this type of clot, but the most prominent study on the topic Management of isolated soleal and gastrocnemius vein thrombosis - PubMed concluded that there was not sufficient evidence of the efficacy anticoagulation therapy in the prevention of progression to DVT.
So far I’ve gotten 2 opinions, one from a MD and one from the PA-C at my primary care. The MD was largely indifferent on starting anticoagulants pending results from a 10-day follow up scan, the PA at my primary care didn’t disagree but didn’t feel there was harm in starting the therapy earlier.
Notably, no studies I am aware of support that aspirin is as effective long term as a Xa inhibitor (Eliquis, Xarelto) and I highly doubt that it is, but I don’t think it’s fair to say that there is no evidence at all of efficacy.
Update on my end. My original superficial clot in my gastroc vein appeared to clear after 4-5 days and I was feeling great until I got some sort of stomach virus from one of my kids and then spent several days dehydrated and immobile, the exact opposite of what you want with a blood clot.
Still at the end of that I was feeling good in terms of leg pain and went for a run, then started to have calf pain a day or so after that run which progressed until I got a second ultrasound. That revealed my original clot in the gastroc vein was clear, but I now had an official DVT lower in my peroneal calf.
I have no idea if it’s the same clot that moved somehow, or if the other clot cleared and I got a 2nd clot. I’ve been waiting for 3 weeks now and can’t even get an appointment with a hematologist due to patient backlogs. Eventually I’ll get an appointment.
In either case I started on Xarelto a week ago. 2 clots in a few weeks is not a good sign. Only silver lining is that my calf is feeling good again and I am hoping it stays that way until I can get a specialist appointment and try to get some insight into whatever is going on.
I would check with your doc, but you should be OK for now as long as you are on thinners….but make sure you stay hyper-vigilant for any new signs of a DVT or a PE.
It’s been a bit. Interestingly my Hematologist said there was no point testing for Factor V and some other things since it would not alter the treatment at all. Once you’ve had 2 separate occurrences as I have had, you’re on thinners for life outside of a few possibilities like May Thurner’s and some other disorders that don’t respond well to Xarelto/Eliquis. Tested for all those and came back negative.
So lifelong thinners it is then. Doing 20mg Xarelto for first year, then will drop to 10mg which doctor says has high efficacy with risk of bleeding equivalent to taking baby aspirin.
In a twist, while I was doing all of this testing my blood pressure was naggingly high. Based on some family history and some other signs I did some additional genetic testing and confirmed I have a rare genetic disorder called Alport Syndrome. It affects kidneys though and has no real correlation to clotting. My case is mild, but will also be on lifelong blood pressure medication now too.
It’s been a fun welcome to middle age but feeling fine, continuing to train with no real side effects or ongoing issues so life goes on fortunately.
Yeah, I suppose since the treatment is the same, I guess it doesn’t really matter if it is Factor V or not.
Welcome to the club….i don’t like admitting more members, though. But as you’ll find out soon enough, it isn’t that big of a deal, overall. Just make sure you get a Road ID or similar identification that will alert first responders / ER personnel to your med situation.