Travelling with APS

[bethw]

Hi Everyone!

I am 21 years old & diagnosed with APS, I want to go travelling to Australia/New Zealand/Bali for 3-4 months. I am wondering if anyone has done anything like this & can give me some advice and getting INR tests in Australia.

Thanks guys!

Beth

[Hidden]

Hi,

This is a really good question. I want to visit home (Australia) but am afraid to fly after DVT and strokes. I don't want to never fly again though. I guess I'm still a little nervous.

I'd also like to know if people have travelled and how they monitor their levels when abroad. Or just even just how they felt about it.

Thanks.

[Ozchick]

Are you coming from the UK or US? You can go to any GP or ED (and wait a long time) who will refer you to pathologist. If from UK you can get limited reciprocal treatment-but usually only for emergency treatment. You could change to Clexane for the duration but bear in mind 4 months worth is very bulky. Could ask specialist to change to Rivaroxaban while you are away (no testing needed) or buy yourself a monitor to check it yourself. If you self test you probably need to do a parallel test for a few times to check self test level against path INR so dosage can be adjusted.

I currently take Rivaroxaban and have done long haul flights-once with Clexane and once with Rivaroxaban and the latter was easier for me as I don't trust any med in checked luggage in case it goes missing.

Enjoy the journey

[Hidden in reply to Ozchick]

I take Lovenox daily. I have flown from Baltimore, MD to visit my son in California without incident many times (approximately 5 1/2 hours each way).

[bethw in reply to Ozchick]

Hi, Yes I just got back from travelling to Hawaii and found my trip to be absolutely fine, I'm not allowed to take Rivaroxaban yet so still on Warfarin.

I was just wondering if people have any advice about being a way from home for a while and getting medical care in Australia for a British Citizen if I need to get tested or need care.

I do have a self test machine which I have been running along side blood test for a while.

Thanks Beth.

[Lure2 in reply to bethw]

What difference in INR do the machine-value and the vein-test value show? If you take them within 2 hours time.

Kerstin in Stockholm (selftesting here)

[YvonneW]

Hi. I have travelled worldwide from the UK. I take warfarin (as APS in not yet licensed for APS with high therapeutic INR in the UK). I self-manage my INR/warfarin with a Coaguchek XSmachine. I check my INR after long haul flights and use clexane (lovenox) if necessary. I always find the nearest hospital to where I am visiting and take a translation in the language of the country I'm in, in case I need medical attention and so I don't have to try and explain APS in a foreign language! I also travel with a digital watch kept on UK time and set the alarm to the time I usually take warfarin, so I don't risk under or over dosing crossing time zones.

There is more travel info on the Hughes Syndrome Foundation website - hughes-syndrome.org/self-he...

Make sure you have adequate travel insurance too, with APS as a named condition.

I hope this is helpful and bon voyage. Yvonne

[Ozchick]

humanservices.gov.au/custom...

This is a link for the reciprocal health care in Australia. Travel insurance is a must as existing conditions are not covered and generally a doctors's visit will cost around £50+ and extra for blood tests.

I think you can get a Medicare card before you travel but it will only cover emergency care. hope this helps.

[Lyndsaylou]

Talk to your MD about switching to LMWH (low macular weight heparin) injections.

I assume you will be taking aircraft for travel? APS people MUST take extra caution in long travel. However Aircraft travel is a different thing altogether. Due to the high pressurized cabin of the aircraft and the high altitude this becomes the perfect climate to develop blood clots in your legs. DVT's can form on any airline passenger even pilots. However because we are APS positive we are of a higher risk. This is what I do when I have to travel long distance either by car or aircraft. I wear compression stockings that are knee high my shoes are either a running shoe or a boot. I also inject myself with levonox 40mg about one hour before departure and drink lots of water.

If I am driving I stop more often and get out of the car and walk around for 10-15 min.

In a flight I will do some leg exercises like move my legs around from bent to flex just try to move around in the small space, and get up at least once an hour and walk the cabin only when it is safe to do so. When I am done traveling I go for a walk or try to stay active for a while after a long journey. Just a word on self testing these new self testing INR machines are meant for people who take warfarin/Coumadin because of different health related issue's not for APS. APS people have far to many antibodies in our blood to receive an accurate INR result. However I encourage you to seek the advice of your medical team and practitioners.

Purchase this book for future ref, Hughes Syndrome: The Antiphospholipid antibody syndrome. A guide for students

by Graham Hughes and Shirish Sangle

SpringerISBN#978-0-85729-738-9

web: springer.com

This is a medical text book site

Take good care

Lyndsay

[Lure2 in reply to Lyndsaylou]

You meant perhaps that up in the air the selftestingmachines will not give an accurate INR. In that case I misunderstood you. I thought you spoke of them in general.

Kerstin

[Lure2]

Well said indeed in every respect but i do not agree with you about selftesting.

I selftest with an CoaguChek XS (Roche). You have to do doubletests with the lab in a vein for some time to notice the difference between the machine-test value and the lab-test in a vein. It is always the SAME discrepence.

I do not know what i would have done without my machine as now as I test every second day, I know I am in the right INR-level and feel fine. I have all the antibodies and in high titres.

Best wishes from Kerstin in Stocknholm

[chrissybell]

My dad went to Australia and just took his anticoag xs self test machine with him. He tested himself regularly and if you say you are only going for 3 months - aim to get someone at your GP surgery to advise you re your doseage whenever your inr changes. (If you go over the 3 months - they should still keep advising you - as it's for your care - and they may not notice). I have a few patients with AF (on warfarin - not APS admittedly) and they just e-mail their inr results through and we e-mail back. Australia is pretty good and yes if you have to go into hospital you don't pay, but if you need to go to a GP you do have to pay. I think this amount of clexane to take with you is a great idea, but totally unpractical - as you also need to keep it below a certain temp (and above also). I struggled doing 2.5 weeks in Spain with clexane. I've just got back from Cuba this morning and no issues - did wear my flight stockings, and drank loads of water - but am now on Dabigatran - so much easier for me (pros and cons) - different discussion. And you must get insurance for APS. Mine was £640 - but as I go to LA in July too - I decided it was very worthwhile. Have safe fun! x