Long haul flight

[jp83]

Hi all, I've been medicated with aspirin and hydroxychloroquine for some time now after a retinal vein occlusion and then subsequent odd symptoms which led to them discovering I have Lupus ANTI- DSDNA antibodies.

I feel much less exhausted than I did back then when all this began, and I can feel when I have missed a hydroxy tablet.

Unfortunately because I live in Tyne and Wear and DrSangle (originally I was under ProfK) is in London....I found it increasingly difficult to attend , aswell as appointments being with nurse rather than the Dr which although they are lovely, to me I want to see the Dr afyer paying through the nose originally and still being a bit iffy with blood results....anyway....

We emigrate to Australia 30th April...and I won't see Dr Sangle or the nurse before I go....anyway, I believe that I should be given heparin for this journey. I rang up the hospital to ask and got no follow up response that was a while ago now.

Does anyone have any links from NICE which I could possibly include in a letter to request I be given heparin to fly with?

Am I correct thinking I should be given heparin- 7/8 hr flight then straight onto a 14hr flight?

Thanks all..if anyone can help with wording a letter I would be very very grateful.

Thanks alot everyone.

[MaryF Administrator]

Hello I would definitely be pushing either this clinic or my GP for Fragmin shots for a flight over 4 hours. If My GP would not prescribe I would be pushing hard for an urgent appointment with the clinic, and sending the letter again marked urgent and copied to PALS. Actually I would want at least two shots prescribed, one for the flight plus another in case of delay and same for return journey. We are all different, but this is the angle I would take for myself. MaryF

[jp83 in reply to MaryF]

Hi I only asked over the phone, the nurse was lovely....but a little bit blaze and 'oh it'll 'probably be fine with aspirin because you are at the same risk as normal population when on aspirin....have you had a clotting event?....oh, right I'll ask and get back to you."

I can't remember if she said 'if you don't hear you know it's fine..."....??!!

Could I write a letter anyway to PALS and Dr Sangle explaining I cannot get to clinic?....or can my GP prescribe this? Each time I've asked you gp for anything relating to APS/LUPUS they always say oh you need to request from your consultant...

[MaryF Administrator in reply to jp83]

If I were you I would write to Dr Sangle and the GP, get email addresses off their secretaries and mark it for them, (the doctors) list your symptoms and history and ask their advice re flying over four hours on a flight, re Fragmin, mark it urgent. MaryF

[jp83 in reply to MaryF]

Thank you Mary....do you happen to know if there are any NICE guidelines which state anything to do with these travel issues?

[Manofmendip]

I totally agree with my colleague Mary.

If you do get Fragmin then, if possible, inject before you take off. Aircraft cabins are pressurised to the equivalent of about 10,000 feet altitude. I have found that in a aircraft in flight as you take the cap off the syringe the medication can dribble out, due to the pressure difference. Also, I found that when I injected, in an aircraft in flight, as I pulled the needle out of me the Fragmin started to come out of the injection site too.

Dave

[jp83]

Thank you all of you for your help, I sometimes wish I had gotten my care transferred to a clinic closer to me then I would be able to attend and chat with someone.

I will write an email/letter as advised thank you.

[Hidden]

Can you get to see Professor Bridget Griffiths at the Freeman hospital in Newcastle, Tyne and Wear? She is a specialist

[jp83 in reply to Hidden]

Yes it's not a problem for me however I very much doubt I'd get in with her before end April x

[Hidden in reply to jp83]

Maybe if you explain your dilemma. Contact her secretary directly. You never know

[jp83 in reply to Hidden]

I may just do that actually!

[Hidden in reply to jp83]

Good luck, I hope they can help