ITP and Flying Long Distance

Hello everyone. I was diagnosed with ITP one week ago. At the time of diagnosis, my platelets were at 27,000. I have been on 45mg of prednisone per day for one week and today my platelets have dropped to 20,000. I am currently living and teaching in China but have decided to return home ASAP to take care of my health and have access to better medical care (I have insurance in the USA). I was wondering how long it normally takes to see an increase of platelets when beginning prednisone. Also, is it safe for me to take an 18-hour venture in an airplane with my platelets around 20,000? I am planning to book my flight home for around two weeks from now. I'm hoping that will give the prednisone enough time to kick in. Any advice would be greatly appreciated. Thank you.

My platelets went straight up on Prednisolone at a dose of 1mg/kg a day.
Before I flew to Australia from the UK last year I asked my haemo what was the lowest count she would let me go with she said above zero

Maggie, my son's hematologist also said flying was fine with low counts, but to try to prevent knocks and bumps. You may want to check all your luggage to avoid having to lift it/risking it dropping and bruising you, sit by the window to avoid carts or people bumping int you, etc.

We have no experience with prednisone, so I leave that to the others.

If a person is responsive to Prednisone, it usually kicks in fairly fast (a few days). I have seen delayed responses, but not seeing some rise isn't a good indication that it's going to work for you. That's okay...there are other options to try.

The ITP specialists that I've heard speak have all said that it is safe to fly with any count. How are your symptoms?

Maggie moving to Tokyo from the States shortly after diagnosis and on 60mg prednisone & then to Hong Kong was no problem for me. Living there and Hong Kong we flew a lot back and forth with stops here & there [Egypt, Italy, England, Thailand, Singapore, Beijing and more] and never did flying cause me a problem w/platelets. For me no problems, I can't speak for anyone else or say yes/no to it being ok - and to be honest with you I never really asked about flying and really never checked my count before getting on a plane except for the initial flight over because they were trying to get me off prednisone before the move [ha!], never thought to check. Also I didn't care what seat I sat in, never got an aisle though because my tall husband got that seat - had my carry-on and a purse, never was concerned about getting bruised or bumped or the like. Be sure you take any medications with you on the plane, don't put them in checked-in luggage just in case it would get lost.

Do you have a non-stop flight? Know this was a tough decision for you to make, hopefully once you get on an even keel with those platelets you may be able to go back to teaching there again. Keep us posted & take care!

My son fly to China last summer with 23K without problem. Doctor prescribed amicar just in case. I also brought something for nose bleeding. But nothing happened so we didn't use any of those.

Hello. I don't see the drop in platelets as a good indicator either. Unfortunately, I will have to wait it out, as I can't stop taking it and will have to be tapered off. Since diagnosis, I haven't had any nose bleeds or episodes of bleeding that won't stop. I did have a couple of blood blisters in my mouth but those healed within a few days and haven't returned. I also have petichiae but that is also improving despite the drop in platelets. I had one small blood vessel that burst in my eye but I was also doing a lot of crying the first few days. That has also improved. Besides that, I do have a handful of bruises on my legs but nothing huge. At what point would you recommend me being tapered off the prednisone? ASAP? I would rather avoid nasty side effects if the drug isn't working. I'm also due to start my menstrual soon and am worried since this will be my first period since diagnosis. I already have heavy and long periods. Do you think this will result in a drop in platelets? Thank you so much for your continue help and support.

Hi Maggie,
I just thought I'd chime in that I've flown with all kinds of low counts and never had an issue. Like someone else mentioned, I really don't think about checking counts before traveling (they can change so quickly anyway), and am mindful of my symptoms or lack thereof.
It sounds like Prednisone isn't doing much for you now. If it's not helping and you've only been on it briefly, I'd personally want to get in with a doctor right away to start tapering off it before you spend any significant amount of time suffering with the symptoms for something that isn't working. If you haven't been taking Prednisone for very long, then tapering should be a relatively quick process over a period of weeks instead of several months (which is what people have to do who have been taking steroids for a longer period).

I have always had long, heavy periods because of my ITP (I've had ITP since I was a child and I'm now in my 40s), but my cycles don't affect my platelet counts. What they do affect is my iron levels! If you generally tend to have significant monthly blood loss, taking an iron supplement is probably a good idea.

Hopefully you can find a good hematologist once you get back to the states (be careful, there are some really bad ones out there, so feel free to post if you get one who is pushing you into a splenectomy or giving you other recommendations that seem crazy. We've seen lots of doozies!) and your doctor should be able to check in with your iron levels and give you anemia treatment advice as well as ITP management.
Good luck.