To travel overseas

[Jenny71]

Hi everyone! I have wg, got the diagnose in april and have done my time with sendoxan and are now increasing my dose of imurel. Hopefully I will have full dose in about a month. Also eating pred and bactrim and of course a couple of more to protect myself from the side effects of the meds.

My big passion in life is travelling and since I´m doing quite well, accept from some pain in my joints and fatigue every now and then, I hope to go on a three week vaccation this autum. But I feel concerned about how to protect myself from getting ill when I´m overseas since I´m immune suppressed. And if I do get sick I´m also worried about the contact with local doctors. The plan is either Mexico or Thailand.

Do any of you have experience from travelling with wg? Any precautions or preparations I should do?

[Sangye]

Do you have to book your travel soon? Autumn is a long way off-- much can change for better or worse (sorry to say, but it's true with Wegs). It might be better to vacation somewhere that has Wegs specialists just in case. I'm also very concerned about any Weggie traveling in countries where sanitation is a problem. It seems like asking for trouble. I'm sorry, I know that's probably not what you wanted to hear. I think you can still travel and have a great time, while not putting yourself in harm's way.

[Hammy8241]

Good travel insurance is an expensive must.

[Jack]

Avoid countries with low sanitation standards and those without advanced medical facilities. Get yourself some good insurance covering existing conditions, there are specialist companies that will do this for a reasonable price, don't even ask the standard insurance outlets.

[elephant]

Hi Jenny, I was told I cannot go to countries that have sanitation problems...per many doctors order. I wanted to go to Mexico and they told me, "No!" I was only on cyclosporine and prednisone. Now I am on three immunosupressant drugs and will not be going anywhere soon.

[Jenny71]

Thank you all for your answers. Althoug it´s really NOT what I wanted to hear.

During this spring I will do some weekend travelling to big cities here in Europe where I feel a bit more safe, especially since home is just a couple of hours away. And then I have to take a long talk with my own doctor to see what he recommends. But the overall message I got so far from him is to try to live as normal as possible, except from the obvious things that limit everyone that has wg and are immun suppressed.

[pwc51]

For information - after my first iteration of Cyclophosphamide I transferred to methatrexate and my consultant was 'happy' for me to travel. I visited the US several times in the 9 months I was in 'remission' and felt reasonably comfortable doing so. Although, I have to say, when my medication ran low when I was stuck in the US with the volcanic ash cloud, the process of trying to get additional medication was not straightforward (or cheap)! I thought I had taken plenty (almost 3 times my stay) but, in future, I will certainly take about a 1 month supply for a week visit.

As soon as I flared up my consultant advised against any travel until the next course of Cyclophosphamide course was complete as the risk of infection is too high when couped up on an aircraft for many hours. I talked at length to two consultants on the matter as I had tickets booked at teh time and was keen to go - in the end the tickets were lost!

[Sangye]

I'm guessing your doc wouldn't have been so happy if you were traveling to a country where sanitation is poor and even people with strong immune systems get sick easily.

[MCC]

What does your doctor say?

I was diagnosed a year ago, now on only prednisone and azithiaprine (however you spell it!) and as far as I'm aware my immune system is no different now to a person without wegeners- in that I mean I am no more likely to become unwell from something like a cold...I've not even been told to avoid ill people as I was at the start of my treatment. I certainly wouldn't let it stop me travelling, but it is all very individual and you should go with your doctors advice.

[Sangye]

Mandy, aza (imuran) is an immune-suppressant. So is pred. Imuran isn't as strong an immunosuppressant as ctx or rtx, but your immune system is definitely not the same as a healthy person's.