Travel with ITP

I am a 65 year old male with ITP. My normal counts are in the 200 - 280 range. When I crash it happens very rapidly and down to very low levels in the single digits. One of my ITP triggers is viruses. So a crash can happen at any time. Before ITP my wife and I were world travelers. Now I am very scared of a crash in a foreign country and ending up in a strange emergency room with foreign doctors with possible language barriers. I have read posting of people traveling all over the world wth counts in the 10-30 ranges or even lower. Yikes. That is too scary. My doctor have always treated me very aggressively with IV/IG in combination with steroids and Promacta based on my age. She has started this treatment combination at 50 or below. Above 50 I am on steroids and Promacta until I reach above 150. My local emergency room knows how to handle my situation. My doctor is in hospital. So she can manage me directly.

I was traveling within the US when I had one of my crashes. I went to the emergency room of a good hospital. My counts were 3. The emergency room staff was not sure what to do. They would not listen to me. I called my doctor and he called a doctor friend at that hospital. The friend came down to the emergency room and got things rolling fast. Otherwise who knows what would have happened. That was a very scary situation that occurred in a leading hospital in a large American city.

My wife and I have done trips to foreign countries that last 1 to 2 weeks. But only if I am above 150. Otherwise we will fold the trip. But we are scared of the longer trips. Also no travel to third world countries at all. To much exposure to strange viruses. Do others have the same fears and concerns?

Are you also deterred from traveling?

When you travel do you use a mask in airports and on airplanes and / or in dense crowds?

I would appreciate your input. Am I a

scaredy-cat

Your doctor continues to treat you even when they get your count above 50? How long have you been on steriods and promacta and IVIG??

I have not really traveled since I was diagnosed. That said no matter what I do ie: camping and stuff I just know my count before I leave. That said I'm about to book a flight from Canada to Arizona. No I will not be wearing a mask and well this coming week I'll be calling my doctors office to ask what my doctor thinks is a number I can fly with. I will get a count a few days before that if I need to treat I can.

I am treated until I am over 150 and STABLE. Usually 6 to 12 weeks from the crash. My dr is very aggressive, came from the Mayo clinic, and is the best doctor I have every had.

I never go way without getting my counts. But I can crash from 200 to below 30 in a couple of hours. I always wear a mask in the hospital, airports, and on planes. And i always carry a mask with me. If people start coughing (in any public place) I am out of there immediately. No travel to 3rd world countries per my doctor. And no contact with people who have been in a 3rd world country for 21 days. My house has a whole house hepa air filtration system. Windows are never opened. HVAC and the filtration system runs all of the time. Last year my wife and I went to Japan. We rode the subways and trains everywhere. We felt very safe. If someone is sick they wear a mask and are are very very considerate. If they cough they cover up. Even the public bathroom are immaculate. We had a private guide with us all the time. She could get us to a hospital fast and translate us as needed. But I still was concerned as I crash fast and with no warning.

Everyone has to do what works for them. I have continued to travel the world. I do not wear a mask or gloves, although planes are prett gross and it is probably appropriate to do so for everyone! We went to vietnam, cambodia and hong kong recently. I am pretty consistent with hand washing wherever I am. Good luck with whatever choices you make. No fun to go away and being worried the whole time.

How do you respond to Promacta alone? Most people take Promacta indefinitely as a maintenance drug to keep counts in a safe range (50k). You could try that and there may not be any platelet crashes. In that case, you would be able to travel. I know that you like your doctor, but there are other treatment options that could allow you the freedom to live your life the way you want to.