Flying with APS

Hi. Has anyone with APS flown after having blood clots on the brain? I had 3 blood clots and a bleed on the brain 7 years ago and have not flown since receiving my diagnosis. I am a little wary of flying now so would be grateful for any feedback. Thank you Sally

26 Replies

  • What does your Dr tell you about flying? Have you discussed it with him/her?

  • Hi. My doctor hasn't been very helpful but I'm seeing my haematologist in October as he also wants to speak to me about going on riveroxeban (not sure if that's the correct spelling) so I can ask him as he is lovely and very helpful.

  • That's sounds most sensible to talk with him but you should know that Rivaroxaban is probably not the drug for you yet. It's only been trialled and approved safe in people who have had Venus clots with INR 2-3. As you have had 3 arterial clots plus a bleed you would not be suitable. I was told by Prof Hunt after my stroke that I can't take it.

    Therefore I'd be very careful about changing. If you want the information about that trial called the RAPS trial run from St Thomas, look at our pinned post to the top right of this page, print it out and show it to him.

    So you know I fly to the USA at least once a year, 9.5 hours and inject half way across. I don't see any reason why with proper instructions you can't fly and take your son away. Get good insurance though....

  • Hi did this happen prior to anticoagulation and also diagnosis, as really your main Hughes Syndrome/APS specialist needs to be helping with these decisions. MaryF

  • Yes it did! Apparently I have had APS all my life but I never put two and two together with all my symptoms. I came off the pill to have my daughter. When I stopped breast feeding when she was six months old I was put back on the pill, and when my daughter was ten months old that's when I had my first major flair up! I was told it will have been the change of hormones that reacted with the pill as the trigger. Obviously it was very frightening not only for myself but my entire family. What made it worse is that I am adopted so have no past family history to go on. Sorry for the epic post!!! As I have said to someone else, I am seeing my haematologist in October and he is really nice and very helpful. He also wants to talk to me about moving onto riveroxeban (not sure of the spelling) but it's not been trialled enough on people who have had blood clots on the brain! I'd love to be able to take my 7 year old on a plane (she's 8 next week) but it really unnerves me with some of the things you hear!

  • Thank you for your answer, I am sure things will be better for you now you continue to be anticoagulated. MaryF

  • I was diagnosed with aps and on aspirin.

    I flew to Turkey (4&1/2 hour flight) on my last day I was rushed to hospital and diagnosed with a blood clot on my brain. After lots of Clexane flew home to a local hospital - I was terrified but ok. Now on warfarin

    Your gp may suggest flight socks and Clexane just b4 u fly and when u land. Drink lots of water. Get up and walk about everything half hour. Do the suggested exercises when seated.

    I wouldn't want to fly longer than 4&1/2 hours.

    But that's my thoughts - u must seek medical advice b4 u fly and inform ur insurance company so u are fully covered just in case.

    Good luck 💋

  • Hi, as per post from ApsnoFab, rivaroxaban has not been approved for APS patients that have had arterial or brain clots. I am unable to take warfarin and was on clexane, clopydogrel and aspirin for over 10 years.

    I was permitted to fly by Prof Hunt, no more than 12 hour flights in a 24 hour period. I had additional dose of clexane just before boarding. I wore thigh surgical stockings, drank plenty of water and moved as much as possible.

    This worked for me on many flights, including a trip to Austrailia, I had no further clots.

    I suggest you talk through completely with your APS specialist.

    Regarding the rivoraxaban, I am trying it as a replacement for the clexane, I have been on it now for over a year, with the clopydogrel and aspirin daily. I am fortuanate as I have a leading doctor, that knows my 'whacky' (Her words) APS and me very well, and the trust goes both ways. I am being very closely monitored -so far its working for me.

    What thinners are you on at the moment?

  • I'm on warfarin but my INR is always up and down. Last month I was 3.6 and this month I'm 2.6 with my target being 3. Only the slightest change to my diet throws it out completely which gets me so frustrated!

    I know it sounds odd but how can they know what affect the riveroxeban would have on a person such as myself if no one has been brave enough to give it a try?!! This isn't the kind of thing you can test on anyone/animal!!! So hard to know what to do!!!

    Thank you for your input

  • Im concerned that your INR is not stable añd your target is only 3 with your history. Im presuming your bleed has something to do with this?

    I personally wouldnt want to fly until it was stable and you say any change in diet effects it, another reason to stay home.

    But I wouldnt give up planning a holiday - you need to talk to your consultant about all this. With your health and warfarin history maybe a trial of clexane or hepirin may be good? Only you and your doctor can decide whether rivoxaban is an option.

  • Just to add they are trialling the Rivaroxaban on people who have had arterial clots now but its a slow process as they have to be careful to pick patients that will not be put at risk. I know this is frustrating but Im sure you can plan something carefully with your Dr that will allow you to fly. As has been said, perhaps your one of us ( Im on LMWH) that will suit fragmin better than warfarin. Perhaps ask for a months trial of it to see how you get on.

  • I would like to add that there is no antidote for bleeding with riveroxaban, like vitimin K for warfarin. Until there is I presume no official trials will be taken on riveroxaban for prople with arterial clots, as increased dose will increase risks.

    In my case, I have a warning signal when my bloods are thick-subclavian steel syndrome-which means I only need a higher dose when my bloods are thick and sticky. So the trial on riveroxaban works for me, as a trio with clopydogrel and aspirin. Monitoring and trust between my doctor and I is paramount. Hopefully my case will help others in the future.

  • There appears to be a widely held view, both here and among doctors (and I must remember to educate my specialist next time I see him, because he gave me the same line) that vit K is an "instant" antidote for Warfarin. It is NOT*. It takes several hours for INR to fall, but actually 24hrs or more for the more important clotting factors to return to normal. If you are on Rivaroxaban then in 24hrs (without a new dose) you are off it, because it is short half life.

    The no-antidote argument against Rivaroxaban is therefore a total red-herring - by the time the warfarin antidote has worked the Rivaroxaban will have worn off anyway.

    For either Warfarin or Rivaroxaban (or other anti-c), what you actually need in a bleeding situation is PCC (or FFP in a pinch if PCC is unavailable), but apparently it is not widely used. I do wonder if the attitude that vit-K is an immediate antidote is one reason for the high fatality / poor outcome rate for warfarin related brain bleeds.

    Of course there is also the fact that there is a lot of evidence showing Rivaroxaban has a much lower rate (and severity) of brain bleeds, compared to warfarin, in the first place.

    *Reference / Quote:

    "After intravenous vitamin K administration, the INR falls within 4 hours, but this may be misleading as it is almost entirely due to a rise in factor VII [16]. The more important rise in factor II takes approximately 24 hours"

  • Probably people before you have done those mistakes when having brain-issues and arterial clots and using Riveroxaban for those symptoms when the drug is meant for vein-clots with an INR up to 3.0.

    Sometimes we just have to listen to those who have made the mistakes or found out what is working for every individual. APS is not an illness with a "quick fix" but we have so many different symptoms so we must be very careful with what we use for anticoagulation.

    I think you should listen to your Specialist-Doctor and not to the one who is not helpful. I think you need a higher INR than 3.0 to feel secure.

    Kerstin in Stockholm

  • Hi

    I am interested in this discussion on several levels. I recently flew to Bavaria for a holiday, only a 2 hour flight but prior to going I asked my APS consultant whether I was safe to do so as I had another clot in my leg in March (whilst on warfarin) His response was unhelpful, he said that I was coagulated so there should be no problem. I asked why then had I had another clot if I was coagulated but he could not answer. I asked if I should take fragmin injections on holiday just in case as I intended to get my inr checked whilst abroad. and he said, no need. He doesn't agree with my new regime of an inr range between 3.5 to 4.5 as he advised that I am at risk of bleeding but surprisingly I had no headache or ear pain during or after my flight, something that has plagued me for years so the higher inr must be working. I initially thought he was a lovely kind consultant but after knowing him for a few years now I actually don't trust his judgement . Although he has told me I cannot even entertain Rivaroxaban as my APS antibodies, I think, are far too high and as others have already mentioned, as a treatment for APS there are limitations so I guess he has got that right. But honestly I no longer feel that he is interested in my case and just coming back to the issue of to fly or not to fly I agree that you really need to discuss it with someone who knows what they are talking about and in my humble opinion I don't think that all APS consultants know enough about individual cases. The first one I was referred to following my initial diagnosis was appalling so I requested a specialist but in actual fact what I have got is a consultant haematologist who knows a bit about APS .

  • Hmmm, sounds familiar. Im afraid unless you can find a dedicated Hughes Dr who sees patients of this disease as a specialty or in the majority of his/her practise, you are likely to get this ambiguity.

    When I was diagnosed by Prof Hughes I had no issues with getting this type of advice. Its very frustration isn't it? Where are you from and perhaps we can point you in the direction of a new Dr.

  • Hello thank you for replying I am constantly frustrated by this condition as both my GP and consultant kept me for four years following diagnosis after multi clots, on an inr which at times was as low as 1.9 and I was often told that 2.3 was "perfect" I had so many problems that I was convinced it was the warfarin as I felt so unwell.. At my insistence I now have my bloods done at the Anticoag clinic, venous, as again I insisted that there was a marked disparity between the finger prick and arm results. I also insisted that my inr be raised and the coag clinic have been great about this, my consultant not so. I have actually had less pain, headaches sleeplessness etc since being on a higher dose but the threat of bleeding reinforced by my consultant is just the downside. It is only because I look at this forum that I found out about a higher inr being required and it took another recent clot to make at least some health professionals realise this was necessary. I live in Sheffield but would be willing to try elsewhere. I did enquire about London bridge but not sure I can afford it all just yet

  • Hi Krysty,

    You say you have a difference between the vein-value and the fingerprick-value of your INR!

    I then wonder if you are positive to Lupus Anticoagulant? I also read that you have high titres of the antibodies.

    I admire you for believing in yourself and not that Doctor what he says, as I am convinced you need another Specialist who understands that if you get clots when on Warfarin (!) something is very wrong. Warfarin when used in the right way is the best anticoagulation for this illness TODAY, but who knows in some years.....

    If you have the possibility I suggest you selftest if you can do it often (I do it every second day as I need to do it that often).

    I have micro-emboli and need a high INR around 4.0 to be without symptoms.

    Good Luck from Kerstin in Stockholm

  • Hello thank you for taking the time to reply. There has always been a big difference between my finger prick and vein results and this is why they have finally agreed to read the vein results which are more accurate for me. I have been tested for lupus anticogulant etc but everything else is fine according to my consultant apparently I am 3000 plus with my APS antibodies which he said was very high but he still kept me on low doses of warfarin. I think because I challenge my consultant quite a lot and ask for answers he is more ambivalent about my care., the coag clinic think its best for me to continue with vein tests rather than finger prick for the time being so at least they see me regularly and listen. I was told that warfarin does not stop clots forming and that the first time I had clots and was diagnosed I should have been advised to wear a compression stocking for two years to give the clots chance to "go away". However I was told by my consultant that it was not necessary to wear such a stocking. Since my last clot recently the coag clinic have advised that it is really important to wear a stocking for the next two years or my leg will be severely damaged. Its sad that health has to be compromised by professionals who really don't know much about APS and when we are newly diagnosed we are so desperate to gain insight and understanding, that we can often be misinformed. Through this forum I have learned so much more than through my own experience of the care available so that is a positive!!

  • Hi - We have gone a bit off topic now which is why we always ask for people to start their own thread so that the answers given to the person who puts up a post are related to that subject matter. The risk here is that not many people will see your entry well down on a post about flying!

    Never the less I am posting you a link to a patient formed recommended list of Doctors in the UK. There are some in Sheffield or close by. Be aware that that patient recommended Dr's can not be reliable as one persons experience can be very different to another and expectations can be raised only to be dashed if the appointment does not go well. On the whole though we find that these are at least Drs that know the disease.

    There are two points Id like to make about what you have said above.

    1. Having continued vein tests is not good for you and will eventually damage your veins. The gold standard is every six months with finger prick in between.

    2. I don't understand your aPL results measure. What antibody is it that is over 3000? Have you had all three antibodies tested? We know that for some people who have a positive for LA aPL that it can cause two things, a) fluctuation INR and b) a discrepancy between finger prick and vein test results. Having said that with constant collaborating of machines and knowing the difference of what that discrepancy is for you, using these machines can still be useful. Many people do use them successfully as long as you are aware of the difference and count it in.

    I also don't think that your consultant fully understands this condition. 1.9 is basically not even being treated so its no wonder you still had symptoms. Many Doctors look at the guidance for treating people with warfarin full stop, which is normally for AF or other conditions. They do not take into consideration that we have a clotting disease and our blood is TOO THICK! For that reason it is hardly surprising that you feel better with less symptoms when your INR is above 3 which is what we advise.

    I think you do need to change your specialist and get one more familiar with Hughes.

  • Hello

    Thank you so much for your reply and the link. I'm just going to work now but there are more questions that I need answers to in relation to your reply, very helpful. I have queried my consultant about the 3000 thing but clearly have not had an accurate answer. When I am at home tomorrow I will work through the points you have raised

    I really appreciate you taking the time to get back to me

    best wishes and I'll let you know how I get on

  • I totally agree with APsnotFab!

    Excellent answer as to anticoagulation!


  • I asked my new consultant about flying longer than 4 hours and he said any distance as long as you wear flight socks and drink water and move and walk about alot. Said clexane not necessary as would be too much. His actual words were" you don't want to bleed to death on a plane do you" I was surprised as education on this forum clearly states to inject if flying further than that. So to keep safe I won't fly more than 4 hours

  • Hi

  • I fly a couple of times a year, and as long as my INR levels are ok, I have had no problems. Good luck x

  • Thanks for the comments x

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