Reoccurring DVT

Hi, I had a DVT 4 years ago and have been on edoxaban every since. GP wants me to come off, as he thinks I don't need them, the haemotologist said I need to be on them for life, but it's my choice, I am scared as the GP said that I may get another DVT within a week of stopping, which I don't want as the first one was horrendous. I had been on several long journeys, prior to getting first one along with newly started HRT, which I was taken off.

My question is, can you come off them successfully without getting another DVT? To be honest I am happy to stay on them, as I think I am right in saying that in the normal way they stop you getting further DVT's, unless you have an operation then you may get one. Just looking for advice, thanks.

[pingman777]

hello - So I had a DVT 5 years ago and I came off thinners about 18month after. I was OK for 3yrs then I had another clot. There is no reason why I get them . I am healthy and I ride my road bike 3 times a week , clocking up 100km a week. Its like anything, once you have 1 , your risk profile goes up . I guess it depends where your DVT was. I still have a swollen leg after mine. I be honest , it does mess with my head, so being on thinners does help somewhat . So , its an individual thing. whatever makes you feel comfortable

[Hidden in reply to pingman777]

Hi thanks for reply, I am happy to stay on them, but feel GP trying to get me off them. About a year before DVT I was bitten by a horse fly and had really bad cellulitis in right left, it really mucked up my leg and then had DVT in same leg in thigh area, still feels lumpy even now, I think they never quite go. I now have really bad veins in that leg and the left one is clear. Not a good look, especially in the summer, tend not to wear dresses too often. I think I was really panicked by the astra blood clot problem, as had mine 10 days ago and sort of convinced myself I now have a DVT in other leg, in reality it's just a bit sore from starting an exercise class recently. I think I am going to stay on them for peace of mind. Had hoped that taking them stopped more clots, but apparently you can still get them, which worries me as the first was so painful. Take care and enjoy your cycling

[djbailey]

Hi -I am like Pingman777. I had a DVT which they could only put down to a long car journey through France, there was nothing else of note. I was put on Warfarin I think initially for 6 months and then taken off it, the standard treatment. I continued to have pain in my legs and was referred a couple of times for further doplar scans which didn't show anything and then on the third occasion a DVT was identified behind my knee in the Poplar vein. During this time it was very stressful worrying that I had a DVT and so it was a whole weight off when I was told that I would have to be on blood thinners for life after the second DVT episode. People sometimes have an aversion to medications but I take lifelong medication for epilepsy and so I suppose in for a penny, in for a pound and it certainly doesn't take any brain space up worrying about if I will get another DVT. But as Pingman says that is a personal choice and I am only giving you my perspective. I think for people like me where no definitive cause has been identified then you are limited in any other modifications you can make to prevent them. The GP should not really pressurise you to come off them without good reason.

[Hidden in reply to djbailey]

Thanks, I agree, when he mentions it next, I am going to say I am happy to stay on them, it is one pill a day, so happy to take them, also feel protected from strokes etc. I sometimes think they just want to save money, take care x

[moo196]

Risk /benefit analysis.... My thrombosis was on the brain.My consultant discussed the risks of warfarin long term and we agreed that it was probably safer to not continue after 2 years.

Was scary but no recurrent blood clot.

[Hidden]

That's good to hear, couldn't take warfarin as have rubbish veins, so use the once a day ones, no testing. I am going to stick with it as feel safer. Take care

[andkin]

Hi, I had a dvt from sitting working too much when 50, had apixaban for three months and then came off. Am lucky that I’ve had no further dvt after three years

[mrdarcy1]

Hi Lifeisfun,

I'm on Apixaban and had my first right leg, "thigh" dvt 20 years ago.

I was on warfarin for 1 year and stopped by doctor.

I hated every day on warfarin, I could never get it stable and was never away from hospital.

Jump forward to 3 years ago and out of the blue abother dvt in my right calf. As the first one the pain was unbelievable and was put on the injections for a few months.

That I hated as it was painful.

Then this fantastic doctor at the hospital said I should stay on anti-coagulation tablets for life.

I have back problems and my left leg has problems, my right leg was my good one.

Now, however, after the 2nd dvt, putting weight on my right leg is so painful I need crutches to stop myself from falling over, as I have foot drop on my left leg.

I don't know about you, but the hospital professor and dvt doctors should have the final say on your "to take or not to take" predicament. Not your doctor I would think.

Can he, not phone the specialist dealing with you and at least ask the question?

What do you want to do? This as well is very important.

I was given all the pros and cons and asked what I wanted to do. I choose to stay on the apixaban for life and have never regretted it ( I'm 53.)

Good luck to you and I hope you stay dvt free.

[Hidden]

Hi sorry to hear about you getting another DVT, that would be my worst nightmare, as so painful. I was never given warfarin, I have really useless veins and have blood taken from hand, so was not an option. Was put on apixiban, which was 2 tablets, one with breakfast and one with dinner, as I don't always eat the same time of day, it was a pain, so now on edoxaban, one a day. I agree with you and have decided to stay on them for life, especially as they now have ways of stopping the bleeding, which they didn't when I first started. The GP was not a regular one and I think, as I have had a repeat prescription since, that nothing was put on my record, to say I needed to stop. I think with all the news regarding clots with covid etc. I doing the safest thing. Take care