[janech]

i have just been diagnised with sticky blood after having been inremission with lupus for 25 years, i was diagnosed at age 15 and am now 46 so it has come as a bit of a shock after all these years. i am trying to find out about flying and the risks as i have 2 boys who now live in newzealand who i try to visit every year, as you can imagine i am a little worried about flying.
my consultant is putting me on an alterntive to aspirin as i am allergic to it. does any-one have any information about flying with the sticky blood problem...cheers jane:

 

[Katharine]

Hello jane and welcome to the forum

As far as I know there is no problem with flying when you are on the correct medication and many of our members do.

Of course, as it is a long haul flight I would make sure I mentioned it to your doc and asked is opinion. I think there are some extra precautions you can take but I'll wait for the more experienced long haulers to get back to you on that

It's great that your lupus has been in remission so long. I hope things continue well for you and don't hesitate to ask questions, there are plenty of people here with APS (sticky blood).

bye for now,
Katharine

 

[greenhaggis]

Welcome Jane!

Not sure as I dont have APS, but I would imagaine that once on the correct medication for sticky blood you will be okay!
I suggest you buy and wear those special socks on the flight, I think you can also get them on prescription in the UK as they are not cheap!

Best always to seek advice from your GP or Specialist as they will know whta precautions to take if necessary!

 

[Maia]

If you just have the antibodies, but have never had a clotting event, then there are no special concerns for you about flying but you may want to take the precautions recommended for people that have had clotting problems: drink plenty of water on flight, get up and move around every 30-60 minutes, do the on board exercises offered (where you sit in the chair to do them), consider wearing the super tight prescription TIGHTS to keep circulation going up your legs a little easier. All except the last one are good for all people, regardless of antibody status.

The percentage of people with the antibodies, that never have a clotting event, is surprising high. Upwards of 80% I think...

As always, you should ask your doctor about your concerns and ask for his suggestions and recommendations for you with respect to flying.

 

[janech]

thanks for all the replies, i am in a mood with my self over this as i have been well for over 20 years even having another baby at 38 which went like clock work, the 1st 2 very early the 3rd to the day. i was 15 when diagnosed 31 years ago i dont know if that makes me your oldest member, i had a wonderful doctor at doncaster r/infirmary Dr Lambert but he has retired now so just getting used to new docs as not been to hospital for a number of years.. as long as i get to see my other 2 boys in NZ i will be happy

 

[Clare.T]

Many of us have the antibodies and never suffer related events. The figure usually given is one third of us have the antibodies and one third have problems because of them Many of us are on aspirin or the equivalent anyway because of the concern over cardiac problems in SLE.

Plaquenil also has a slight blood thinning effect. It could be worth considering taking this for its vast range of general beneficial effects. It is referred to as an 'insurance' medicine in the hope of stopping the lupus rearing its ugly head

Um ....you aren't actually the oldest nor the longest diagnosed ! :wink2: I can give you 20 years on the age score.

All the best
Clare

 

[dixy]

just see u Dr and take list of questions about long flight with u

Take care sorry the lupus has come back. well at least you are aware of it so hopefully the meds will sort it 4 u

dixy

 

[janech]

used to take plaqunil many years ago after being pumped full of steriods, just seems weird going from having low platelets to blood that is too thick, thought all problems were behind me now. hopefully once i,m started on the aspirin substitute the head-aches will disapear and i might stop forgetting things, im told its a symptom of the sticky blood thing.thanks

 

[KarolH]

Hi there,

I have APS and have flown successfully without incident. I agree once you start to thin the blood a little the headaches will probably ease up or hopefully stop all together.

I wish you luck moving ahead. It does make ya wonder how we wake up one day with thick blood doesn't it...

 

[Ciarons mum]

Hi

I have APS and i take warfarin to thin my blood. You need to ensure you have the correct insurance to fly and you should be OK if you follow sensible advice regarding flight socks, drinking plenty of water and walking around during a flight. I would discuss this with your doctor if you are concerned.

You might want to look at the Huges Syndrome support forum to get more advice and support. You should be able to find this if you google Hughes APS support

Louise

 

[Clare.T]

Hello Jan

It might be worth asking about starting the Plaquenil again
Just having antiphospholipid antibodies does not mean a diagnosis of APS. There are criteria for a formal diagnosis of APS. Antiphospholipid antibodies in themselves would not compromise any insurance situation.


Clare

 

[LolaLola]

Dear Clare, What you say is very helpful re. antibodies. I have had clotting events, Immi hasn't so maybe her Insurance situation would be a little better than I thought. She has the antibodies but never a clotting event despite her being formerly diagnosed. (Appalling Reynauds and dreadful Livedo)
x Lola

 

[Clare.T]

Hello Lola
Yes one quickly gets into a confused and complicated area and my comments below were within a very narrow context. Firstly that people often assume they have APS because they have antiphospholipid antibodies when in fact having those antibodies might only indicate a slightly higher risk than people without them. Having the antibodies is not a diagnosis anymore than having a positive ANA.

Doctors make a diagnosis that is most useful for doctoring. The criteria are formal guidelines and might not be adequate in practice. The Sapporo Criteria are listed here

http://www.thelupussite.com/forum/showthread.php?t=52667

There have been attempts to revise it. It probably has the same shortcomings as any Criteria list most clearly evidenced by Dr Hughes comments in his Alternative Criteria list on the limited usefulness of the ACR list.
Doctors have diferent diagnosing habits too. I am sure that many people diagnosed with SLE would have been diagnosed with UCTD by other physicians who stick more closely to criteria. It might make a big difference for insurance purposes since as far as I know none of the connective tissue diseases have the same dire impact on insurance as SLE

I have a diagnosis of SLE quite simply because I have enough criteria for it but it isn't systemic lupus in reality If I was ever asked what my diagnosis is I guess I would have to put SLE and then say exactly how it affected me.
I haven't filled in any insurance forms for years so I suppose it depends what questions they ask. Health questionnaires I have seen ask very general questions such as have you ever had a stroke or thrombosis or seizures or heart problems, cancer and so on.

It can easily get very problematical and it would be interesting to know the experiences of people who have taken out travel insurances lately.

I hope all is well enough with you and Immi


Hugs
Clare