Who's riding again after a blood clot?

markp80

Hi there,
Great to hear things are going well for you! Sorry, I missed your last post so didn't answer your questions
I'm not actually on warfarin. My GP is trialling a new drug callled rivaroxaban (well, certainly new for the treatment of diagnosed DVTs). 20mg/day, for 6 months. No blood tests or anything required, that's just the standard, fixed dose, which I believe makes it a lot less hassle than warfarin.
I'm cycling hard on the turbo, certainly not giving the DVT any consideration. Can't get outside but not for any DVT related reasons.
Due to finish treatment late Jan then will be seeing a haematologist to see if we can see why this happened.
Keep us updated.
Cheers,
MarkP

markp80

Quick link to rivaroxaban -
http://www.nice.org.uk/guidance/TA261
I wasn't told to wear compression stockings, don't know why.
My doctor told me to train as much as I wanted, and allow the DVT to tell me when to stop, so that's what I've done. Initially walking was difficult but cycling was ok, so I've never let it stop me going for it, and I've been following a pretty tough routine on the turbo.
Cheers,
MarkP

shinobishoryuken

Update:

Saw a haematologist last week and after more blood tests and scans such as Echo-cardiogram and lower abdomen Ultrasound (which have all come back fine) they still cannot tell me why I suffered the DVT.

They said my chances of another clot if I come off the warfarin would be 8% per year, and as its cumulative that would mean a 40% chance of another clot in the next five years!

They are keeping me on the warfarin for now, which apparently gives me a 'less than 1%' chance of clotting per year.

My frustrations are that my lifestyle, job, and now training are all almost identical to last year when I was diagnosed with DVT.

I am trying to live life without worry, and the compression stocking and daily tablets are starting to feel 'normal' for me. Some leg issues, and I can often feel pulsating in both calves at night when resting.

I've entered sportives, first one will be Cheshire Cat (which I did last year pre-DVT) and am training hard, weekly WattBike, weights, rowing machine. I've been averaging 110 miles weekly and am looking to increase this to 150 miles per week over the next month.

Completed my first 50 miler in three hours this Saturday so despite everything I am feeling somewhat fitter than this time a year ago. Im also a lot lighter due to smaller meals (but the same foods- no more eating like a bodybuilder)!

I hope anyone else going through the ordeal of a DVT finds comfort that there is light at the end of the tunnel, albeit with some adjusting!

markp80

Thanks for the update, it's good to hear things are going well for you!

They are keeping me on the warfarin for now, which apparently gives me a 'less than 1%' chance of clotting per year

- that's interesting, I guess that gives you some peace of mind for now. Coincidentally I come off my anti-coagulant this Friday, after 6 months. I mentioned earlier in the thread I am on a different drug to you. In a way I'm happy to be coming off it, as the drug I'm on doesn't have an antidote (unlike Warfarin) so if I have an accident I'm in a bit of trouble (they just have to wait until it wears off, and keep you topped up I suppose, which is a bit of a worry!) I cut my finger with a kitchen knife a month ago, and that was a real pain to stop bleeding!

I am feeling somewhat fitter than this time a year ago. Im also a lot lighter

- and that will carry plenty of health benefits on its own, so keep going with the cycling!

I am trying to live life without worry

- And I think that says it all.
Thanks for sharing,
MarkP

warreng

Ok - just found this thread and it's cheered me up slightly.

I cycled to work on the 16th Nov and was really out of breath and I went to the company nurse and by that Wednesday I was diagnosed with DVT and massive PEs. Had 6 days of heparin jabs in hospital and now on Rivaroxaban. The consultants are fairly non-committal on cycling - so what I'm gaining from this is that I can eventually get back to a decent level of cycling!

gethinceri

There is only one type of compression stocking which is supported by Peer-reviewed, Randomised, Control Trials. It is the Kendall TED stocking and is thigh-length.
There is no other Anti-Embolism Stocking on the market which is clinically proven to reduce the risk of DVT.
They are not intended for use while exercising.

EBEB

It was queried above about why cyclists are getting DVTs. It may just be chance, but I would have a hypothesis why it might be higher.

Trauma to the lining of veins is well known to cause DVTs. It is supposed to be the commonest cause of upper limb DVTs and can be associated with exercise e.g.. Swimming

The hypothesis would be that cyclists cause DVTs in a similar way, but in lower limbs because cyclists only use the lower limbs.

As regards Rivaroxiban, the manufacturer of that and other NOACs are all close with reversal antidotes. I think one may have already been licenced in the USA. Even if the antidotes aren't yet available they can probably be reversed at any hospital anyway. And they don't last very long in the blood normally anyway. Personally that is the choice I would make.

gethinceri

[url=http://www.bikeradar.com/forums/viewtopic.php?p=19759249#p19759249]EBEB[/url] wrote:

Trauma to the lining of veins is well known to cause DVTs. It is supposed to be the commonest cause of upper limb DVTs and can be associated with exercise e.g.. Swimming

Trauma is one of a number of causes of DVT.
By whom is it supposed to be the commonest cause in upper limb DVT and where have they discovered this?
How prevalent is DVT in swimmers?

Interesting hypothesis, it'll take some research.

warreng

The haemotologist did mention that a lot of endurance athletes cause their own trauma and hence DVTs. I haven't looked for research

I'm really missing my bike at the moment. I can't even look at it

gethinceri

There are no published comparitive prevalence studies between athletes and non-athletes, so I'll save you the bother of looking.
DVTs usually form due to pooling of blood in the valve cusps. the action of the calf muscles encourages venous return so if you are mobile you should have no reason to need compression hosiery while exercising.

markp80

[url=http://www.bikeradar.com/forums/viewtopic.php?p=19756963#p19756963]WarrenG[/url] wrote:

Ok - just found this thread and it's cheered me up slightly.

I cycled to work on the 16th Nov and was really out of breath and I went to the company nurse and by that Wednesday I was diagnosed with DVT and massive PEs. Had 6 days of heparin jabs in hospital and now on Rivaroxaban. The consultants are fairly non-committal on cycling - so what I'm gaining from this is that I can eventually get back to a decent level of cycling!

Sorry to hear about your diagnosis WarrenG. You are in a worse position than I was, as I didn't suffer any PEs, but the good thing is you've thankfully been diagnosed and are now on treatment. Certainly for me, I've been able to get back to cycling says if I'd never had the DVT and hopefully that will be the case for you too.
Good luck and let us know how you get on.

Cheers,
MarkP

markp80

[url=http://www.bikeradar.com/forums/viewtopic.php?p=19759249#p19759249]EBEB[/url] wrote:

As regards Rivaroxiban, the manufacturer of that and other NOACs are all close with reversal antidotes. I think one may have already been licenced in the USA. Even if the antidotes aren't yet available they can probably be reversed at any hospital anyway. And they don't last very long in the blood normally anyway. Personally that is the choice I would make.

It was interesting to read your post about antidote development, and a quick Google returned some interesting reading on current trials.
The best information I have is that currently, even in hospital, there is nothing to be done to get your clotting working until the drug has gone from your system. Having said that, I wouldn't hesitate to use it again, rather than warfarin.
Cheers,
MarkP

EBEB

@MarkP80

Rivaroxiban is a direct inhibitor of coagulation protein Xa. Blood products already exist that contain factor X, along with lots of others, so It would be expected that it would at least partially/temporarily reverse the effects. The drug companies are working on more specific antidotes anyway.

@gethincerini
Trauma being a common cause of upper limb DVTs is pretty standard in medical school textbooks. You might need to buy a dictionary and look up what the word 'supposed' means, as if they had presented good evidence that it was a fact I wouldn't have needed to use the word 'supposed'.

You should also use the opportunity to look up the differences between 'prevalance' and 'incidence'.

Moontrane

A timely rejuvenation of this thread!

This summer a motorist struck me from behind while I was riding. LOC, fractured ribs, disc herniation, tears to labrum, and the loss of a lot of skin. I can state now that I'm glad I was knocked out because I can't imagine sustaining these injuries while conscious. It appeared that someone took a laser ice cream scoop to my knees, a ¼" drill bit to my wrist, and a belt sander to my face and elbow (lots of other abrasions and bruises, as one can imagine). Oh, and I tore my R sternocleidomastoid. Bobble head, I was.

The helmet probably prevented a few depressed skull fractures, based on the bruises that did occur to my head. The helmet was twisted to the extent that the helmet strap forward of my ear shaved off layers of skin from jaw to temple, and the strap behind my ear sawed through the bottom of my outer ear where it connects to my face.

About a month and a half into recovery I started taking walks and trying some light exercises. I was rewarded with odd inner ankle pain and swelling, the area being pinkish and warm.

The following happened over a week:

A few days later my upper calf (same leg) hurt, which I attributed to a brief session on the trainer, during which I felt oddly tired and noted an elevated HR. A couple days later I had pain in the upper R chest, which I uncleverly attributed to a strained pec minor. I thought I was catching a cold because I could hear some "ticking" when breathing lying down. The chest pain diminished a bit but was accompanied by R flank pain that worsened by the end of the week to the point that I went to the ER. Worse pain I've ever felt - I thought my kidney was going to explode.

After an x-ray the doctor diagnosed me with pneumonia even though I had no congestion, fever, chills, or cough, and my white blood cell count was normal. I brought up the flank pain, which he didn't know about because the admitting nurse took inadequate notes. He ordered a CT, which showed partial lung collapse and fluid. Once again he said it was pneumonia and sent me home with an antibiotic.

There was less pain over the next two days, but I was INCREDIBLY tired, and my resting pulse was 85-90 bpm - way elevated. Over the week I developed a sharp pain to the L chest when inhaling. So, six days after my trip to the ER, I was back with what I thought was pneumonia that was spreading.

After a CT angiogram I was told I'd be staying for a few days due to bilateral pulmonary embolism. I was started on two blood thinners, one an injectable. During my first full day there a tech did an ultrasound that revealed a DVT in the R superficial femoral vein. I was out after nearly a week and back on the bike four days later. The chest and flank pain were gone after a couple weeks.

I'm into my fourth month on the warfarin and expect to done with it in a couple months. At the six-month point I'm having a follow-up CT angiogram to ensure things are cleared up. I am concerned that there might be permanent damage to my lung(s), since I went a week longer that I should've without proper treatment due to the misdiagnosis. :evil: My resting pulse is currently 60, whereas it was about 50 before the collision. I might simply need a couple more months of regular riding.

I believe the recovery period after the collision was the cause of the clots. I've not been that sedentary for that long since infancy, I suspect. If I ever face another period of such inactivity I'll know to discuss with my doctor the potential for DVTs.

Moontrane

[url=http://www.bikeradar.com/forums/viewtopic.php?p=17661257#p17661257]cyco2[/url] wrote:

If you google 'pulmonary embolism' it may find you as very interesting. My wife died from it. I reckon your doctor has no idea what to advise you and for why? Because they only deal with sedimentary types where gentle exercise would be a step to far. After a prostrate operation I was advised not to drive my car in case of the need for an emergency stop. So I went by bus which was involved in a crash. So, when a Doctor advises something like don't ride your bike ask them to qualify it and analyse it carefully.

I'm late to the thread, but so sorry for your loss.

Moontrane

[url=http://www.bikeradar.com/forums/viewtopic.php?p=18017425#p18017425]shinobishoryuken[/url] wrote:

Thanks Mark.

The cost of the scans has almost ruined Christmas but I desperately needed peace of mind / clarification- my DVT also was 'unprovoked'. I would pay for them again if needed too.

Well done for getting back on the turbo- I took my time getting back into training because of fear of clot moving and the total shock of it all. Also the pain didn't subside for quite a while.

Are you also wearing compression stockings? If so, what brand, type etc?
I have tried several types and am still not happy!

I have read that a lot of people refrain from cycling on the road / trails whilst on warfarin but I have been doing so now for the past few months. Like I said in my previous post DVT is serious and I know some people are unlucky and never make it through one. If its a nice day and I have the time I try and get out and enjoy a quick ride.

My main concerns are my ability to strength train and jog in the future- what advice have you been given regarding fitness training?

Dr. told me standard is 6 months warfarin and CT angiogram at conclusion. I applaud you for getting the scan on your own.

warreng

[url=http://www.bikeradar.com/forums/viewtopic.php?p=19765793#p19765793]Moontrane[/url] wrote:

A timely rejuvenation of this thread!


After a CT angiogram I was told I'd be staying for a few days due to bilateral pulmonary embolism. I was started on two blood thinners, one an injectable. During my first full day there a tech did an ultrasound that revealed a DVT in the R superficial femoral vein. I was out after nearly a week and back on the bike four days later. The chest and flank pain were gone after a couple weeks.

I'm into my fourth month on the warfarin and expect to done with it in a couple months. At the six-month point I'm having a follow-up CT angiogram to ensure things are cleared up. I am concerned that there might be permanent damage to my lung(s), since I went a week longer that I should've without proper treatment due to the misdiagnosis. :evil: My resting pulse is currently 60, whereas it was about 50 before the collision. I might simply need a couple more months of regular riding.

That is exactly what I had - except I'm on Rivaroxaban. A bilateral PE and a DVT.

I was cc'd on a letter from the lung guy to the cardio guy who recommended a CT scan at 6 months to ensure the clot(s) have gone "otherwise I'd be at risk of pulmonary hypertension if normal pulmonary function hasn't resumed" - this has terrified me and I have a regular check up with the doc to reassure me. Physically I feel ok but mentally I'm shot!

I'm so glad you're back on the bike - that's my dream at the moment!!

gethinceri

[url=http://www.bikeradar.com/forums/viewtopic.php?p=19762232#p19762232]EBEB[/url] wrote:

@gethincerini
Trauma being a common cause of upper limb DVTs is pretty standard in medical school textbooks. You might need to buy a dictionary and look up what the word 'supposed' means, as if they had presented good evidence that it was a fact I wouldn't have needed to use the word 'supposed'.

You should also use the opportunity to look up the differences between 'prevalance' and 'incidence'.

I don't want to get in a fight about it, I am very well versed in medical research relating to DVT, you are right in highlighting that prevalence and incidence are different terms in clinical research. I was merely trying to assist in the thought that compression hosiery is a proven method of treating or preventing DVT whilst exercising which it is NOT.
Thanks for making my username all Italian, sounds much better than Welsh.

warreng

I saw the haematologist last night and it looks like I'm on Rivaroxaban permanently which is a pain but needs must....

He's seems to be most concerned about the potential of internal bleeding after any accident. We did talk about the upcoming antidotes but he was of the opinion that even with a widely available antidote that it would be pointless in the event of a large trauma

Other than that he's happy for me to get back to some sort of exercise. I've got my eye on a new bike to celebrate

Agent57

I'm on warfarin permanently after at least two DVTs (and I think I had an earlier small one that went undiagnosed but cleared up). My main one went undiagnosed for nearly 3 months and in the end I was only sent for ultrasound because the GPs had run out of ideas. Apart from a lifetime of rat poison, the main residual problem is that the veins in my left leg are screwed. It's more than 4 years since my big one, but the veins have never recovered. I think they're permanently stretched so the return valves don't work and blood just pools in my leg. I wear a compression stocking sometimes for that reason. Doesn't really affect my cycling, but it's always the left leg that complains most when I'm running.

warreng

[url=http://www.bikeradar.com/forums/viewtopic.php?p=19765809#p19765809]Moontrane[/url] wrote:

[url=http://www.bikeradar.com/forums/viewtopic.php?p=18017425#p18017425]shinobishoryuken[/url] wrote:

Thanks Mark.

The cost of the scans has almost ruined Christmas but I desperately needed peace of mind / clarification- my DVT also was 'unprovoked'. I would pay for them again if needed too.

Well done for getting back on the turbo- I took my time getting back into training because of fear of clot moving and the total shock of it all. Also the pain didn't subside for quite a while.

Are you also wearing compression stockings? If so, what brand, type etc?
I have tried several types and am still not happy!

I have read that a lot of people refrain from cycling on the road / trails whilst on warfarin but I have been doing so now for the past few months. Like I said in my previous post DVT is serious and I know some people are unlucky and never make it through one. If its a nice day and I have the time I try and get out and enjoy a quick ride.

My main concerns are my ability to strength train and jog in the future- what advice have you been given regarding fitness training?

Dr. told me standard is 6 months warfarin and CT angiogram at conclusion. I applaud you for getting the scan on your own.

The doc said as I'm on Rivaroxaban permanently there's no need for a CT scan at 6 months - which I thought was odd

I've been for a short spin (3 miles!!) and it left me with a slight pain below the chest bone - I presume where the bilateral clot was. The doctor is not clear at all about rehab so I'm just taking it as it comes and not pushing too far

paul.k

Ok Its been a while since anyone posted on this thread , i got 2 high level dvt`s in my hip in august 2015 , i thought it was caused by a poor fitting saddle as i got front end numbness for 2 weeks after a long ride of 76 miles , the specialist said it wasnt the saddle that caused it and was at a loss to find a cause , as it stands i am 4 months post dvt diagnosis , on warfarin 9mg p/d , inr 2.5 , the pain in my left leg and hip brought me to tears more than once ( it was that bad ) , anyway from 23rd of august til 26th october i was off work , after i returned to work i went back to the docs one day and asked , when would i be able to ride my bike again ? , i was kind of thinking the doc would say 6months to a year , or even your riding days are over , when i asked the doc , he replied change the saddle so you dont get numb and take it steady , ( wow ) i was off the bike for 12 weeks in total .
Like everything cycling related i went out injured on peak performance , and came back in anything but ,
After 12 weeks of inactivity and still carrying 2 partially dissolved clots in my hip the first 10 mile ride was the hardest i have ever done , i started very steady as cramp / weakness was a big issue , but new its january and a little over 4 months since the clot struck me , I have got up to 30 mile rides again and am steadily building my legs back up .
My biggest worry is , will the power come back and will i have to wear the compression stocking to ride the 75 mile sportive i Will be doing this summer .

gethinceri

What are you expecting the compression stocking to do?

paul.k

i have been told that i have to wear them for 2 years , i know they relieve the trauma symptoms and stop my calf and ankle from swelling , dont think i want to wear one compression stocking whilst riding

warreng

It's been 2.5 months since my PE and DVT and I'm back on the bike. I'm doing an hour an evening in Zones 3 & 4 and been out twice. I did 50km at 25kph last Saturday with no side effect. Perversely it's not my physical ability that's holding me back but there's a mental block - I don't want to push myself just in case "something" goes wrong. Not sure what I'm worried about :oops: . I don't appear to have any oomph either - my legs are ok but top speed has gone. I'm assuming this is just reduced lung capacity

HumphUK

Well - I was diagnosed last spring - 6 months of blood thinners. But before it was detected I stopped running (swollen leg and problems breathing) - so switched to hacking up and down hills on my fixie. On reflection just about the worst thing I could have done. After two months I was back on it - just keeping an eye on my max heart rate. I lost a lot of top end power - but it has returned slowly. My points:- Early diagnosis is key - that is the dangerous period. Dont think if you are active and haven't had any trauma that you cant have a clot.This belief also seems to be shared by the medical community - I was told three times "no, it couldn't be". It looks to be more common than I thought. Secondly, that life can return to normal quite quickly...though everyone is different - and some others have posted far worse cases than mine. Take care all

Agent57

I had my last clot about 2 or 3 years ago, and am cycling probably more than ever now. Certainly in terms of time in the saddle in one stint - I did more than 8 hours on the turbo trainer in December. I stopped wearing the compression stocking about a year ago. I didn't feel it was doing much to help me, it looked stupid on the bike and I got tired of people asking if I was in the Masons or why I only wore one sock.

warreng

"last" clot - DVT or PE? How many have you had??!! I really don't want to do it again!

parmos

another DVT victim here bit of a forum newbie as well 44 yr old about 110kg due to Powerlifting but also into biking do roughly 1k a year through MTB mainly but do a bit of road here and there.

late January 2019 had some tightness behind my right knee didnt think too much of it next day woke up leg completely red raw, tight and very painful got through the morning at work had to leave as the pain was like hell.

went to the local hospital suspect DVT etc took blood said you need scans will take 3 days to get a scan i said well i will just go home then i was 330 miles away from home they give me some Apixaban to take immediatly then i drove home got home around 2:30am went straight to A&E yes suspect DVT showed them my discharge note guy was sound said look you've had a long day get yourself home get some rest take some more Apixaban in the morning and i'll get you a scan sorted ASAP for you.

Next day 1st Feb got ultrasound, clot behind the knee 6 months worth of Apixaban thanks i also had a chest cold for roughly a month which is something i never usually suffer with so had potential PE i reckon as well.

1st apppointment May 30th with haemotologist she said she wants to get to the bottom of this unprovoked DVT so since had chest x ray, ultrasound on clot area again, going for CT scan on pelvic/abdom in a few weeks, lots of blood tests as well.

i've carried on doing light gym work nothing heavy as beforehand i was squatting 200kg a few days before the outburst upped the CV a lot done approx 800 mile now mainly on MTB.

got measured for stockings yesterday right calf is 19.5" left calf is 18.5" both cold so need to make some stockings for me specially they also want a full length stocking.

recent Ultrasound on clot area shown that it has dispersed even though my leg is still large and aches so going to be on Apixaban till at least the end of august that will be 7 months then ish the haemotologist has mentioned that she may want me on the tablets for a full year from diagnosis.

did have weekend beer binges but went 101 days clean when diagnosed but since only had the recommended daily amount 1-2 drinks a day but even that is few and far between now.

will keep updated

cheers

JB