I'm booked on a long haul flight(10 hours) to Jamaica from the uk in febuary and I am worried about travelling with this disease! I know a lot of people still fly regularly from what I have read in previous posts. I have had a couple of head colds since being diagnosed just over a year ago and have had no leak whatsoever. I am receiving 1g/kg ivig every 4 weeks.

Michael,

I travelled by air  for both work and pleasure regularly after having my SCLS attacks without incident.  Prior to the flight, I normally take acetaminophen (Tylenol) or ibuprofen (Advil). Prior to boarding, I purchase extra bottles of water to keep hydrated during the flight.  For long trips like yours, I like to get up and stretch every few hours.  Hope this helps.  Safe travels.

Robert

This issue has been discussed extensively before, see https://rareshare.org/topics/869

The key questions to consider are: (1) Are you or not on an IVIG therapy and dosage with a proven track record of having stopped all episodes of SCLS?  And (2) Will you be going to an isolated, backward place or one where there is a major trauma center/university hospital nearby, in a First-World country where English is understood and where quality-grade IVIG will be available?  In sum, your medical history and the nature of your destination matter a great deal. 

[Robert's (rnuara) comment above doesn't make it clear that he has been on a steady and successful IVIG therapy for over six years, and that he has been episode-free since then.]

Regardless of the answers to the prior questions, if you decide to travel within your own country or internationally, it's a very good idea to take with you: (a) written instructions in English from your physician on what is to be done to you should you experience the classic SCLS triad of hemoconcentration, hypoalbuminimia, and hypotension; (b) one or more key, printed-out, English-language medical articles on SCLS, to include "The Clinical Picture of Severe Systemic Capillary-Leak Syndrome Episodes Requiring ICU Admission," https://journals.lww.com/ccmjournal/Abstract/2017/07000/The_Clinical_Picture_of_Severe_Systemic.15.aspx, available via most libraries or else from me by request, for you to take and hand out at the Emergency Room of the nearest hospital; and (c) ample medical insurance coverage including eventual air repatriation to your country and city of residence.

I've been without incident since being on ivig, has anyone had issues flying while on ivig or were these problems on a previous treatment?