would like to travel to USA,
Have not flown long haul flights for many years
Have SLE, APS, Sjogrens, Angina. am very concerned re risks of DVT,
Should I take the risk? its an opportunity to see my Brother, won't come again.
Any advice would be appreciated
Hi, this is a situation you must weight up with your specialist who may be at liberty to prescribe something like Fragmin shots for the flight, others on here have had similar advise and care when doing long haul, and successfully flown. However you will have to talk it through with your main consultant. What I would say though is if they do agree to Fragmin shots or similar for flying, one dose there and one back, ask for two spare, in case of flights being delayed. Let us know what they say.
Also, surgical/flight stockings! MaryF
MaryF
Yes best to discuss it with your medical team.
Some sort of anticoagulation will likely be recommended if you are allowed to fly. Also using "travel socks", making sure you move you legs and flex your feet regularly, get up and walk around when you can and drink plenty of fluids, preferably water or juice ... not alcohol.
I will be flying long haul in a few months time. I'm on warfarin so hopefully that bit is covered but I will be constantly moving my legs, drinking water to stay hydrated and wearing flight socks.
Thanks re flight socks. I've never heard of them.
Hi. I agree totally with Mary and Tassie. I fly long distance fairly often. Met with my rheumatologist only last week where he asked about what precautions I take on flights and he advised exactly as suggested.
Plenty of non alcoholic fluids (ideally water) before, during and after the flight; stretch your feet ( the 'second' heart of the body) and legs frequently and also make sure that you get up and walk around the aircraft regularly (doesn't matter that this may mean minor inconvenience from squeezing past other passengers to them - they dont have APS);
heparin before, during a long flight and after arrival with sufficient spares in case of lay overs; and not just travel sox but travel stockings that go to the knee. I am a male and my black travel compression stockings appear just like black business socks at my ankles.
If you can afford an upgrade to a roomier seat that has more leg room that is also well worth considering on a long flight. Its only money. Take the appropriate precautions and grab the opportunity to visit with your brother while you can!
I'm about to a fly longish distance (5 hours) and when I fly I will be 30 weeks pregnant. I'm already anti-colaguated but I'll be carrying a couple of extra Clexane injections in case my bag get's lost. So I already have my med cert to say they are prescribed medication and not to take them off me. As I will be pregnant I will also have a flight clearance letter. I will wear compression socks and I have bought business class seats so I have more room to move around. These plans have all been made in conjunction with advise from my medical team.
Bubblybev you need to carry your clexane in hand luggage. I checked the safety of it with the manufacturers in the hold and it is not permitted below as it is too cold unless they have animals in the hold.
I always used to take 2 lots like you but got my husband to carry the spares in his rucksack. You can contact the medical information dept and they will fax over a letter to confirm this.
The only thing I can add to the above is get an isle seat, so you don't have to wake anyone.
I go on long hall flights, self test and have Clexane injections to give myself, I did ask if I could change to the injections only for the holiday, but they said no, because of problems getting back in range afterwards
10 day holiday, if I was going for longer I think I would argue my point a bit more
Don't forget your insurance
Life is for living but make sure you speak with your specialist
Enjoy your holiday
Hi there - I understand your concerns and share them myself. I am due to fly to Australia in November and will then be taking internal flights too. I spoke to my haematologist before hand who said the risk of clots is negligible when anticoagulated and not to w
(Sorry - pressed submit too early!) .....said not to worry. However, I will still be wearing my compression stockings, have booked aisle seats for all flights, won't be drinking alcohol and will be keeping well hydrated. My haematologist suggested taking on the plane an empty water bottle and asking cabin crew to fill it for me so that I don't have to continually ask for tiny plastic cups of water to be brought to me. I will probably also ask my GP for a few clexane injections too for emergencies. Enjoy your holiday!
If coming to Australia be aware that customs and immigration can be quite strict . There will be no problem if you declare any foods or meds but have a copy of a prescription for any meds you carry, especially oxycodone type. Our cute sniffer dogs are very good!
If you can afford it business is the way to go!😉 I had enough flyer miles for this option last year - a flat bed makes the 24 hours flight much more bearable!
I am off to the States in the summer and it will be my first long haul flight in years. I am fortunate to be travelling business class on this occasion so will have more room to stretch out and rotate ankles etc but I have agreed with my doctor that I should have flight socks and Fragmin for the flights. I have (currently testing seronegative) APS, Sjogrens and Lipo-Lymphoedema. I take Rivaroxaban for the APS and Amitriptyline for the Lipo-Lymphoedema. Good luck and talk to your GP/APS doc for best advice.
I assume you're already on an anti-coagulant, but you don't say? If you are,speak to the team that administer your INR results. I have to travel for work purposes and I seek the Doctor's advice each time. Usually the advice is when therapeutic on warfarin, get a reading the week before. This way you know you're stable and correctly dosed for the outward journey. They then usually like me to get a test done wherever I am (can be tricky to arrange) but this then ensures that you're still in range for the return flight, or allows them to adjust your meds (phone YOUR anti-coat team, as they have all your results). If that is all do-able, perhaps see if your brother can arrange for you to get your INR taken at his doctor's or local hospital (I did have to make my way to an Italian hospital once and try to explain what I needed in pigeon Italian, with a note from our holiday rep). I know the U.S. Can be tricky, as you're supposed to be registered to receive care, they may not allow you to pay for a blood test.
If you're not on anti-coagulants, then seek your doc's advice early, so he can plan a strategy.
Thank you for your advice, I will discuss it with my Consultant early next month as it won't be until July that I hope to visit the USA .
(fingers crossed)
Many thanks
Kimu
I'm due to do a long haul flight in the next few weeks I was at my daughters APS appointment and said can I be cheeky and ask some advice for me. I explained that this was my first long flight since diagnosis and I was a little bit worried, she said to me your target INR is 3-4 and your on warfarin you will genuinely be one of the safest people flying. She also said hydration is very important and that people underestimate the need to drink water when flying. Obviously move around too.
Thank you for your response, and yes we all underestimate the importance of fluid intake and the importance of refraining from alcohol.
Alcohol even in small doses dehydrates me badly, all sound advice which I will take on board, other peoples experiences are invaluable.
Good luck with your travel plans,
Many thanks
Kimu
I agree with all of th above and will add one more suggestion: just in case airline problems result in a change of flights, get and keep with you a note from your doc explaining that you have circulation problems and suggesting you have an aisle seat. My flight from Scotland to Heathrow was delayed, so I got on a different flight across the pond and they had no record that my request for aisle seating was "genuine'" as the info from my doctor had not been transmitted to them. I spent the majority of that flight lying on the floor out side the rest room (charming!) with my feet propped up against the fuselage.
The note from my Consultant is a brilliant idea.
How awful, it must have been dreadful for you -you must have had a miserable time and if asking my Doctor for a cover letter is all that it takes to back up my needs then I will ask him for it.
I too could have the same problem re flights as I have to fly from the Isle of Man to Heathrow.
Thank you so much for your response
Kimu
I have a docs letter requesting bulkhead seats but only get them half the time even when I explain. I got so upset and in so much pain on one flight I went to the back to do just that and I was told I wasn't allowed to cos it was against health and safety! In the end I had to move to be on my own on a three seater with my legs up by the windows and lying very uncomfortably over arm rests that couldn't be raised. I still fly, but until I get on the plane and know I havea bulkhead I always panic! :s
First determine IF you can get health insurance as there is NO WAY that you want to set foot in the US if you can't get it. I personally know of a man who broke his arm on a cheap "weekend away" to New York and hopped the next flight home with a badly broken arm rather than face US medical bills to set him arm as he hadn't 'bothered' with insurance. I know of another family who had just hopped over the border from Canada for a few hours where their son had a fall when he tripped on some pavement - they were out of pocket for thousands just to be seen at A&E to be treated for a minor injury and assessed to make sure it was nothing serious - with something as complicated as APS it isn't IF you got ill that you need to worry about, it's how on earth you'd PAY for it if you got ill. If you can arrange insurance, and you can afford it, then please do go. My husband was only recently diagnosed with APS but for the last 27 years we have travelled repeatedly from the UK to the west coast of Canada (flight 9-11 hours depending). In all that time he never had a DVT, and that was before he was on the blood-thinners. He'd had PE's unrelated to flights, but not one directly attributable... Go, enjoy yourself, second chances don't come around in this world. You'll never forgive yourself if you don't! 
Thank you for your reply, people are very kind in responding to my questions.
Your reply is full of good advice, your comments re insurance bring it home to me with a bump.
So this is going to be my first priority.
Scary to be away from home anyway, (not having travelled for a very long time) but to be the other side of the world
without insurance would be mad wouldn't it!
So many things to take into consideration. but as you say second chances don't come around in this world
Many thanks
Kimu
Hi, I have just APS and do from time to time travel longhaul. I've made about 20 such flights since diagnosis in 2005. I make sure my INR is at the top of my safe range. I take my home test kit with me. I avoid alcohol and coffee for a day or two before I fly. (Alcohol is rare already....). None on the flight. Lots of water for a day or two before the flight. Regular walking up and down during the flight. Also I'm lucky and get to travel business class for long haul and get to be comfy. For China (from UK) I change into loose clothing but do use compression socks. I always seem to get worse INR results thought for a week after such a trip - my guess is sleep changes, less sleep as I seem to do a UK day after a China day, and less control of vitamin K.
I have a similar problem David, whenever I fly my INR goes all over the shop. All fun, but worth the chance to travel...
Thank you for your suggestions and advice, all of which are very sensible and I will take note of them and if I travel will put them into practice.
Many Thanks
Kimu
Have had a very good response to my questions and appreciate it very much,
I really could do with a chat and will look into contacting you later on.
Many thanks
Kimu
My son lives in California; I live in Maryland. I have made several round trips to his home without incident. When traveling west, one of the last things I do just before leaving for the airport is take my Lovenox injection. (This is because California is three hours behind Maryland, and I usually inject myself early in the morning. Thus when I wake up the following morning it will be approximately 24 hours between injections.)
My advice is more of the same. I'm on Warfarin and I travel long haul at least once a year. Being on blood thinners is the first thing, but I make sure to keep hydrated, wear compression tights, keep active and walk around the plain every hour. I have an issue with swelling and pain when I fly due to post thrombotic sydrome, so I also request a bulkhead seat so I can raise my legs up against them as that helps with the pain, but it can be a bit of a fight with the airlines to book them, even with a doctor's letter explaining!
RE: testing your INR when in the states
If you're on warfarin, it's good to have your doctor write a letter in advance authorizing a lab to draw blood, otherwise my experience is that they will not do it without lots of phone calls and faxing of orders. I always keep a letter handy in my suitcase in case I need to test. You should ask the doctor to please state "Kindly give lab results to patient" since it is infuriating when they won't tell you, but need to give the results to your doctor. (Errrrrrr) But be aware that lab results can vary a bit from place to place with their individual processes, even with the International standard to follow. It's usually about $50 with no insurance.
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