New on Apixaban - so many questions! - Anticoagulation UK

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New on Apixaban - so many questions!

Kat_O
Kat_O

Hi everyone,

I was diagnosed with DVT (clots in my thigh) on Monday and was put on apixaban. It started with coming back from a long haul flight, then I broke my foot two days after which made me immobile and was told to rest and keep my foot elevated, which then caused DVT - I had severe, cramp-like pain in my calf and then past my knee. I have a million questions and try to keep myself calm, but any advice or information would be really appreciated (I am still waiting for the appointment at the anticoagulant clinic and so far have not received much information):

? Is DVT usually accompanied by the pain? And if so, how long can it take after being put on medication to get rid of the pain?

? I was advised to try move a lot (although with the fracture and still a lot of calf pain this is limited), but I get up every hour to walk around and try do some slow exercises. Is there anything else I can do to help DVT?

? My calf is always so warm (even hot). Apart from being uncomfortable, I can deal with it, but I wonder if I can do anything to help it cool down (like cold compresses)?

? I was told to look out for the emergency signs (pain in chest, coughing up blood etc) and I’m kind of just waiting for something to happen, I can’t seem to relax knowing I have clots in my thigh and how will I know where they move to. Did anyone request another ultrasound at any point to try and see if the situation improved?

? Last one :) I was due to move to Canada for a year’s job next week, which is obviously on hold now as I was told I cannot fly for the first two weeks after starting treatment.

Has anyone flown long haul (7+ hours) while being on treatment? How soon after starting the treatment were you advised you could fly? And what precautions, if any, can I take to help reduce the risk when flying?

Thank you so much! Any kind of advice or personal experience would be extremely helpful and reassuring.

Kat

21 Replies
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Poor you! It's a great deal to take in at first, isn't it? I believe it can take some time for the pain to go away. I had PEs rather than a DVT, and was told not to fly for 3 months, but do as your consultant tells you. There may well be a leaflet you can download or get a paper one to tell you what to expect. But we all suffer from huge anxiety - every twinge is another clot forming.... I don't think the medics, no matter how well-intentioned, quite realise this.

Kat_O
Kat_O
in reply to mrsredboots

Thank you mrsredboots 👍 There’s so much to take in at first, it’s quite overwhelming!

Hi there. You have been going through some pretty major stuff recently, no wonder you are worried. First of all, you need to know that the medication you are taking does not get rid of clots. What it does is makes your blood clot less easily which helps your body be able to dissolve the clots itself over time and also helps prevent further clots happening. It takes time for your body to dissolve the clots so you might well get pain for a while longer. Secondly, you do need to be aware of becoming breathless as this can be a sign of a clot moving into the lungs and lodging there but this is unlikely to happen now you are taking the medication, so try not to worry. You are doing all the right things about being active and you will be able to fly again before too long, you will just have to take some extra precautions like drinking loads of water, wearing stockings, getting up and about regularly. Have a look at all the helpful leaflets on the thrombosis uk website and I hope you feel much better soon and enjoy your year working abroad.

thrombosisuk.org/informatio...

Kat_O
Kat_O
in reply to SpeedyH

Thank you so much SpeedyH, this is so very helpful! I will definitely look through those leaflets and try get myself more informed. Although I am overweight, I have always been so so active with sports and always up and about that this current situation I’m in, is making me feel way out of my comfort zone!

I’m going to the fracture clinic today and might see if the Dr there can answer some of my questions too. Basically, I just want to try and help myself to get better, while being calm. 🤯

Sorry to hear your diagnosis, especially if it was out of the blue, it all comes as a shock.

Whilst the NHS deals very well with the immediate problem, it can't deal with the on-going support (to a degree).

Was diagnosed in the last week of November (2019) the day before I was supposed to be on a flight.

I am (was) a competitive cyclist, training 12hrs a week, and thought I had pulled a muscle - as I couldn't walk properly on my right leg. Turns out it was a full occlusion on my femoral vein.

To answer some specific questions.

Pain = Yes, for me.

It took me about 3weeks to regain full use of my right leg and where the pain had subsided. Presume your on a double-dose for the firstk week? Give it time, the medication thins your blood, but your body breaks down the clot - need to give it some time to work it's magic.

Additional Ultrasound.

I struggled with this a *LOT*, as it comes down to uncertainty/not knowing and wanted to be assured that I could start training again.

I've accepted that I have to trust the treatment, my blood is being thinned, my body is breaking down the clot - I've started light training again and will take it easy building back up.

As for clot moving, I try to actively manage that anxiety, and put it in the same place as "I might get hit by a bus tomorrow" - ie. It might move. It might not. Overtime, this will be easier to manage (as life returns back to normal).

Flight.

Only your GP can advise on this, and this might be A sensible to ask for a follow up ultrasound, really would seek GP advice on this.

The biggest thing to say though, whilst right now it is very raw and freaking scary, and it's cliche as hell, it *does* get easier with time. The "what if's" start to subside, the initial shock becomes less and in a few weeks time you will be well on the way to recovering - both mentally and physically.

They've diagnosed the problem.

You're on the right medication.

It will take time.

Your body is unique dealing with problem.

You've got this

Kat_O
Kat_O
in reply to richeej

Thank you so much richeej for your response, it’s so helpful and it makes me feel a little calmer, so thank you.

Oh no, a day before your flight? 🤭 That’s harsh! And especially when you were (are) so active!

I am 32 and while I do have too many kgs, I thought I was quite active, playing tennis 4-5 times a week, plus coaching all weekends, going to the gym, for walks and barely ever sitting down (apart from when at work).

Yes, I was put on double-dose for the first week (2x 5mg twice a day) then 1x 5mg twice a day afterwards). My pain and tightness in the calf has gotten a lot better (and don’t need painkillers anymore), so I guess something must be going right. Did you have any discolouration in your leg? I’m just noticing mine is slightly more blue than the other one and trying not to panic.

I had an appointment at the fracture clinic yesterday and the orthopaedic doctor said he “wouldn’t bother flying before 6 weeks”, so at least I have some sort of timeline now. I’m having my GP appointment on Monday and will ask for more information. The orthopaedic doctor yesterday also suggested I ask for a referral to see a haematologist. Does this sound like a normal course of action?

Thank you again! 🙂

Kat

Kat_O
Kat_O
in reply to richeej

richeej - Just another question, sorry. Last Monday I was given two injections (when I was diagnosed) and then in the afternoon I got Apixaban and was told to take double dosage for 1 week, starting that afternoon then normal dosage afterwards. So today is Sunday and I’m unsure whether tomorrow morning do I just take one tablet in the morning and one in the evening?

richeej
richeej
in reply to Kat_O

Hello! Yes, – on Monday, down to 1 pill in the morning and 1 pill in the evening.

Kat_O
Kat_O
in reply to richeej

Thank you. I’m just scared of messing it up. I am seeing my GP at midday so will confirm but need to take pills in the morning first so thank you.

I'm in Canada, so some information might be different than what you've been hearing. The pain usually subsides in about a month. I had a substantial one in my groin. Are you wearing a compression stocking? If they told you not to, don't but if you are allowed, it relieves pain and reduces swelling as less blood makes it down in your leg. Try not to fixate on the chest pain issue. It does happen but I think it is rare. Avoid impact. I was also told to get up and move every hour with my 2nd dvt (thigh), for my first one they didn't want me moving at all, and I had a thigh high stocking on. That was 13 years ago, and a lot of theory on treatment seems to have changed.

I flew to mexico 2 weeks after my low thigh DVT with doctor blessing. Ended up with phlebitus, very painful inflamation of surface veins around my ankle. ended up in the hospital in mexico doing CT scans etc. The mexican dr thought it was INSANE that I flew with an acute DVT. Talk about a scary flight back home. I was told DVT's settle in 4-6 months. They never go away, but they flatten and grow on to the vein wall, then there is no risk of it moving to lungs etc. Every day that goes by you are safer. Think of it that way. It's slowly flattening on to the wall and connecting itself. That being said, I developed the 2nd one bc of the poor circulation in that leg from the leftover scarring of the first one, so always be wary if you are flying or driving long distance. if you aren't on blood thinners, monitor your vitamin K for sure. Stay hydrated and wear a stocking. They refused to do a follow up CT on me bc they said it is 'resolved' and there's no point in imaging it at 6 months.

I would seriously reconsider your flight to Canada, and see about seeing a haemotologist and a vascular dr for advice of when you can fly.

good luck!

Life gets pretty normal again, promise.

Kat_O
Kat_O
in reply to Daneball

Thank you Daneball for sharing information here, I have to say it all feels quite overwhelming.

Oh you poor thing! It’s bad enough having to deal with all this in your home country, let alone somewhere else!

Well the nurse who gave me the prescription for the treatment said the advice is not to fly for first two weeks of the treatment. But yesterday the orthopaedic Dr (who looked at my fracture and I told him what had happened since I got the moon boot) said he wouldn’t fly for 6 weeks. So my husband will go ahead and move to Canada next week and I will wait here until I am advised I can go... (although now that you say DVTs don’t settle before 4-6 months, I’m slightly worried I’d have to delay my move for half a year!) But for example, even after 6 weeks, will I be safe(er)?

I read about Vitamin K and green leafy vegetables etc. Can you monitor your Vitamin K levels yourself or is it a matter of going for blood tests?

I wasn’t told to wear compression socks/stockings, now with the fracture it might be a bit difficult to put it on, but when that heals (and isn’t painful anymore), I will definitely wear it. I know some people wear compression stockings all the time.

Thank you again for your response!

Daneball
Daneball
in reply to Kat_O

The vitamin K piece is only an issue if you are OFF Apixaban. If you are on it, I'm told it doesn't matter. Vitamin K interferes with warfarin and coumadin, but not apixaban. Re the travel, I'm sure your Dr would be cautious, I would trust what they say.

Kat_O
Kat_O
in reply to Daneball

Thank you! I really appreciate all the info!

Hi Kat_O. Sorry to hear about your troubles. Re: pain - I have found that topical ibuprofen helps - I use Phorpain and Ibulive for my calf DVT. Compression stockings do help with the pain - I have found some funky ones on Amazon. Good luck.

Kat_O
Kat_O
in reply to Clotinthedark

Thanks so much! I was told not to have ibuprofen because it contradicts with the blood thinners but can have paracetamol. My calf is a lot better but just very tight and I can feel the pull when I’m up and walking. Also my knee (or just below it) started to hurt. Oh well, I hope to get through this soon.

I will definitely have a look at some compression socks - do you use socks or stockings?

Hi Kat_O, I use the socks. At least they keep me warm! Try them, as long as your specialist nurses/doctors have no objections. I have found that when I lie in bed that a pillow under my lower legs helps with the 'heaviness'. Sorry if I sound like someone telling their Grandmother to suck eggs.

Kat_O
Kat_O
in reply to Clotinthedark

Thank you! Just a question- last Monday I was given two injections (when I was diagnosed) and then in the afternoon I got Apixaban and was told to take double dosage for 1 week, starting that afternoon then normal dosage afterwards. So today is Sunday and I’m unsure whether tomorrow morning do I just take one tablet in the morning and one in the evening?

Sorry Kat_O - that is a question for a pharmacist. Do what they say. Good luck! Hope it all goes well.

Looks like you have some great responses already. My own experience is that I’m active, had large occlusive dvt in calf out of the blue. Took apixaban for three months which cleared it. Some residual but no further issues after two years. When flying a week after initial clot, although was 3.5 hours rather than long haul. Important is to keep active without overdoing it and keep healthy psychologically. This group is great as well

Hi K o sorry to hear your news. I was diagnosed 9 months ago.

After the shock of pain pull in my leg . Was put on riveraxoban straight away whilst they found the cause. It took longer than 6 weeks to find out. Even now I don’t know the underlining condition that caused the sticky blood all I know it’s high cholesterol blood cells. I was on statins before this and now I also have these thinners .

My dvt consultant at the dvt clinic told me that it was too dangerous to take me off the thinners to let my blood go back to stickiness to ge able to determine a cause as I would be st risk of further clots and I am already in thinners and that the treatment of thinnners would be the same regardless of a prognosis. ( nowt like not giving a patient their peace of mind as I worry )

I Wish now I had probed him as I have friends who told me that he was a lazy doctor who could not be asked !! Even my gp looked confused when I told her what the clinic had said!

What he did tell me was that I could take thinners and be the safest person on the plane because they were in my blood . I did a long haul to Singapore and back last xmas , my advice drink water all the way there and back , west your stockings on the plane and get up and walk . Let stewardess know .

They did balloon when I was in Singapore but that might have been due to heat and altitude.

As soon as I came back it was all normal.

I had an ultra sound get your gp to refer thou to dvt clinic they won’t do a MRI until 12 weeks in to see if thinners are working.

There’s a lot of Gaps in the nhs care for young people with dvt.

Good luck. I have had anxiety be prepared to go easy on yourself even though you might feel fine . It can creep up on you in your work.

Do take care of yourself

I feel awful for you. I was in your position a couple years ago and to be honest the worry and anxiety still haunts me which is why I’m here right now.

My DVT was also in my right leg but was labelled extensive and actually started at my foot and ended near my abdomen which led the doctors to the decision that I needed 3 procedures of thrombolysis. (Which all doctors were previously strongly against as it was ‘high risk’) I was only 18 and was petrified, my clot was completely random, due to my birth control pill. I was later told when I was moved to the high dependency unit that trying to make me mobile and walk around was the worst thing they could of done as this was forcing the clot further up my body and could of led to PE or a stroke.

So to answer you question about relaxing, I still struggle to this day as I feel I was given a lot of mixed signals from the doctors, therefore even now when doctors say I’m ‘fine’ I don’t 100% believe them. As well as the common fact that we never really know what is going on in our body, the only thing we can do is understand that what will be, will be. Worrying will not save you. Just be sensible and know the signs which you are fully aware of now I suppose! The emergency signs they have warned you about will be signs of PE in your lungs which is a lot more serious and can happen to as a result of DVT however, if you do have any of those symptoms you are in the best place to report them and I’m sure they won’t discharge unless they’re sure your all clear of PE.

I was also planning to go on holiday a week after being admitted to hospital, I was told I couldn’t fly for obvious reasons. However I was later told by a specialist that it has nothing to do with the flying that causes clots, it is the way you are forced to sit for 7+ hours, the right angles that your thigh, calf and feet are in made it difficult for blood to flow easily causing it thicken and clot. Therefore what I took from this is: get an extra leg room seat or make sure you stand up and walk around very often keeping your legs stretched will help blood flow massively.

My muscles were seized for around a week or two after being discharged from hospital which meant I couldn’t use my right leg at all, I was on crutches. The pain and the swelling eventually does go down you just have to trust the system. The most important thing is once you are discharged, keep doing little exercises everyday to push yourself and each day you will improve.

To finish this reply, I will say that besides being left with health anxiety and worrying about myself a bit too much. I have been fine. The hospital kept me as an inpatient for a year after I was discharged and had check ups with me every couple of months to ask how I was feeling, how my blood thinners were and if I experienced any pain. Due to this now happening to you, your concerns will never been ‘ignored’. If you go to your GP with a health worry and inform them of your previous DVT your doctor will understand and be probably deal with you faster than someone with no medical history. If you want to request an ultra sound I would maybe just say you have been experiencing similar pain to before and would like to be checked. I can’t imagine a doctor would decline someone with blood clot history access to an ultra-sound.

I hope everything goes well for you in the future and hope my answers helped to some extent :) sending lots of health your way

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