Finishing with Apixaban

[Kat_O]

Hi everyone,

I remember how scared I was nearly 4 months ago when I was diagnosed with DVT and blood clots in my thigh (provoked - long haul flight followed by resting due to a broken foot). This group helped me enormously to get through the initial stages and calm me down.

Now I am a couple of days away from finishing with Apixaban (initially prescribed for 3 months and after a phone consultation with my Dr extended for an additional month) and I am scared of not being on the tablets.

My leg is nearly back to normal, also the fracture has healed so I am back to being active and doing exercise. The pain has nearly all gone away and there is only occasional redness in lower part of my leg and my foot when I stand for a longer period of time.

I read in some posts and heard from friends that for a leg to go back to normal (colour and swelling wise) can take even up to a year.

My question to anyone who has completed a treatment with Apixaban, or any anticoagulant drug, how did you feel after stopping the medication?

Is there anything I should be careful about? Is there anything I shouldn’t eat, drink to ensure my blood stays as thin as possible to try avoid possibility of future clots (I don’t drink alcohol or smoke anyway)?

Any word of advice would be really appreciated.

Thank you.

[Hidden]

Yet again, the hidden side-effect of blood clots strikes - anxiety! I really think the professionals simply have no idea how bad it can be. I'm on rivaroxaban, probably for life, but I was thinking only yesterday that if they told me I had to stop taking it, I would be incredibly anxious and every ache or twinge would be a clot (it is anyway, but it would be twenty times worse). Which is to say I feel your pain, but have no advice to give you, alas.

[SpeedyH]

Hi there. That is really good news and I’m really glad your leg has healed well! I am not able to stop anticoagulants but I can imagine how scary it must feel. But just as you can now do without the crutch for your leg, you can do without this crutch for your blood. Hurray!

You are now much more aware about clots so you will be better placed to recognise if you develop another one, and you now know that you have to be especially careful about flying. There is a lot of really useful information on the thrombosisUK website, including leaflets about preventing clots, about flying and also about panic after a thrombosis which is a real thing for many people. Here is the link and I hope you get a chance to enjoy another long-haul holiday as soon as circumstances allow. thrombosisuk.org/informatio...

[moo196]

Shortish reply for now.

My blood clot was on the brain. Warfarin 2 years. Terrified when I stopped it but I got the consultant to write the reasons why I was stopping it down. (bad side effects, risks outweigh any benefits etc) and then distracted myself with a 6 week trip to India.

Might be worth asking for a similar statement to remind yourself why it's a good idea to stop?

I just take daily aspirin and plenty of exercise now.

[EsteleW]

Hi Kat_O.

I've just come off rivaroxaban (Xarelto) after a year of using various anticoagulants (enoxaparin, apixaban and rivaroxaban). It was my second DVT - a big one, from the ankle to the hip, and it came with two PEs. The haematologist wants me to stay on anticoagulants but the side effects were too much for me so after a year of cycling on and off different meds I'm seeing how I go without them. I'll have another scan in a month or two.

You're not alone - it's scary. I've got Factor V Leiden, I'm getting on (59) and now I have multiple scarred and narrowed veins in my left leg, with chronic venous insufficiency. I felt much more secure anticoagulated.

This is what I'm doing to keep my blood on the thin side: for a start, minimal sugar. Sweet things tend to cause inflammation so I want to minimise my blood sugar levels and avoid inflaming the inside of my blood vessels. I'll also lose a bit of weight if I can, as extra weight is a risk factor.

The wrong oils are inflammatory so I'm also being careful about what oils I consume. High omega 3 oils are fine (olive oil), but high omega 6 oils are not (canola, rice bran, sunflower etc.), so no vegetable oils for me. That means minimal processed food. I'll eat lots of cold water fish such as sardines and mackerel to get the omega 3. A fish oil supplement might be a good idea...

My haematologist knows I'll be taking curcumin as a supplement, and she suggested I look into taking rutin. Both of these seem to have anticoagulant and antiplatelet effects. I'd never heard of rutin but as the suggestion came from my haematologist I'll give it a go.

I reduced the dose of anticoagulant gradually over the last week or so that I was taking it, but I have been taking them at full strength for just over a year. Doctors don't worry about this but I was frightened of a rebound effect. I don't think it's important, but, just saying.

I elevate my leg unless I'm using it, and I flex my toes whenever I think of it (so, a lot!)

You could also try a compression stocking, and I expect you know that the oral contraceptive pill is a no-no if you clot.

It's hard to know how well and quickly anyone will recover after a DVT but it sounds like you're doing well. It does take a while, in my experience, and four months is still early days, I think. Stay hydrated, and good luck!

[Kat_O in reply to EsteleW]

This is so so informative and I thank you for your time writing it all down for me!

It’s very scary. I was so panicky when I first found out about the clot and felt I was constantly having minor panic attacks. Then, with time, I got on with my life and kept busy and gone for walks etc to keep as active as possible considering my broken foot.

Now that I’m nearly there with recovery, I started playing tennis again a few times a week like I did before and try to drink a lot of water.

But in terms of foods, there is still so much to learn so I appreciate your explanation.

My hair has been falling out and my nails got really weak so I bought omega 3-6-9 (as I know that helps) and after I got it, I read on the packaging that you shouldn’t take it if you’re on blood thinners. What a surprise that was for me but with what you say about omega 6 oils, it makes sense. So I will get some omega 3 only.

Staying away from sugar will be the most difficult for me but I will remind myself of the extreme fear I had when I was diagnosed and stay away.

I’ve not heard of curcumin before (I use turmeric often) but I will get some - is it tablets or powder?

Thank you again so so much! It’s stressful but hopefully all these things become a part of my everyday soon and that I learn to control my thoughts a bit better.

I wish you all the best with your recovery and life post-anticoagulant pills. Good luck!

[moo196 in reply to Kat_O]

Turmeric is curcumin.

[EsteleW in reply to moo196]

Tumeric is 3% to 8% curcumin, so you have to eat an awful lot of tumeric to get a therapeutic dose of curcumin!

[EsteleW in reply to Kat_O]

Thank you! and, no problem, I hope some of it's helpful. I'm sure you'll be okay - you had considerable provocation for what happened, and you're already playing tennis! But since you clot, it might be an idea to speak to your doctor about taking a low dose of an anticoagulant as a prophylactic if you plan a long trip or if you break a bone again. If I had thought of that I might have avoided the problems I now have. A prophylactic dose when needed shouldn't hurt, and might avert a second clot. Just a thought.

You mention that your hair has been falling out - was that happening pre-apixaban? I ask because I found many references to hair loss among people taking the novel oral anticoagulants - rivaroxaban, apixaban, dabigatran etc. Apparently alopecia is a known side-effect! My hair started falling out about 10 days after I started Xarelto. It slowed down as I reduced the dose and seems to be stabilising now. I hope yours stops with the apixaban.

Sugar is a terribly addictive thing. The ony way I can avoid it is by replacing it with lots of fresh fruit, and being careful to always have healthy food in the house in the afternoon when the cravings come. It does make a real difference, 'though, I find. My leg is cooler, paler, smaller and less congested when I'm able to be sugar free.

The curcumin I take is in capsules. The therapeutic dose is larger than the dose recommmended, and it is metabolised quickly and removed from the body, but it seems to do good.

Try not to worry. You really do sound as if you're doing well, and you will continue to recover. You'll probably feel better in yourself when you've stopped the apixaban so that will help, too. I wish you well!

[Asdan05]

I was told I will be on them for life and wear compression tights. It is confusing when consultants at different hospitals advise different regimes.