Air travel and ITP

My son aged 19 has chronic ITP - diagnosed 10 years ago. His count is usually btw 10 and 20 thousand. He stopped all treatment 8 years ago and we have never had an emergency. He sometimes gets nosebleeds but we have always managed to stop them. When he comes down with a virus like flu we notice petichae but otherwise he is generally in good health. My question is - what is everyone's experience with flying long haul. We were told by the Haematologist that flying was not possible. Does anyone have any experience in this field?

Years ago, one of the top ITP Specialists said that it was ok to fly with low counts. Some people here have done it. I don't know your son's doctor's reasoning, so it would be a good idea to research and make an informed decision.

Here is some detailed advice from The ITP Association in the UK:
Follow the link:

www.itpsupport.org.uk/flying.htm
Flying and ITP
"The Association makes no claim that flying with ITP is or is not "safe", but we have failed completely to find any evidence that it is not safe. We have spoken to a number of doctors at annual conventions and elsewhere and none have been able to point to any such evidence. It may of course exist, but if so, we have not found it."

You can also do a search on FLYING on this website, or follow this link:

pdsa.org/forum-sp-534/search.html?query=flying&searchdate=all&childforums=1

One concern is that with ITP there is, paradoxically, an increased risk of clotting. Therefore, it is wise to follow precautions against deep vein thrombosis, at least wrt occasionally getting up and walking about, especially on long flights.

Do you know of any research - I have found a bit on the internet. It seems in Europe there is some sort of medication one can take when visiting the dentist or flying to prevent any bleeding but the doctors here don't seem to know about it. I live in Africa and ITP seems quite rare here as no one knows much about it including the docs. Many thanks

Just wondering - my sons platelets can drop quite quickly - in a 12 hour period - how would that affect the flying. Does one do a blood test before the flight and again after the flight both ways?

I think the drug to which you are referring is tranexamic acid. Worldwide, it is marketed under a wide variety of brand names, and in tablet form it is intended to stem menstrual flow, but is also used off-label for other bleeding, such as dental surgery with hemophilia. It works by interfering with the process of breaking down blood clots.

I assume the reason that your son is not treating his ITP is because he has found that the treatments can be worse than the condition they treat. That may be true for tranexamic acid as well.

I would expect that tranexamic acid would increase the risk of deep vein thrombosis during flight. If your son has had a splenectomy, that risk is greatly increased.

You can read up on tranexamic acid here: www.rxlist.com/lysteda-side-effects-drug-center.htm

What did you decide sigsmigs? I've been watching this thread - don't know if we can really answer your question: "...how would that affect the flying." because we are all so different there really isn't a one-answer-fits-all.

I can tell you we moved from the US to Tokyo shortly after diagnosis when I was on 60mg of prednisone - so for the next few years I did a lot of long flights a couple times a year. I don't think my platelets dropped but didn't have a count done right before or right after a flight. On one trip back to Tokyo my right knee and just below it got red and warm and swollen - my Tokyo hematologist told me from then on to wear compression stockings when on a flight and to be sure to get up and walk around [always did walk around on the long flights]. Got a pair of the compression stockings that are hip high. To this day I still will wear compression socks when flying or on drives out of town, but now wear the knee-highs.

Good luck to your son!

For what it's worth, I've been flying cross-country regularly for more than two years now. My platelet counts are quite stable, generally over 100 these days, and my primary care doc and hematologist haven't expressed any concern about my traveling from the West Coast to the East Coast and back again. And nothing at all has happened to my platelet counts.