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. :unsure:

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.

[JanW]

Yes, we are all, when taking an chemo drug are immunosuppressed.

I think that doctors' advice on what to do while immunosuppressed varies widely. One person might be told never to ride public transportation again (which would be horrible if you were in this part of the country), another not given any special instructions whatsoever. The only time I really thought about my immune compromised state was when I got that awful rash and the derm said -- of course you're not itching, you've got no immune system (and if you had seen it, it looked like it would itch like crazy).

That was all upside though!

[pberggren1]

Another broken thread?

[andrew]

Stupid forum software...grrrrrrr :(

[andrew]

I'd call the support line but I need to upgrade the forum first :(

Often just posting a dummy post like the above should bring the thread back into line. Sorry all. Annoying glitches will be fixed soon-ish-ish

[Sangye]

No problem-oblem :biggrin1:

[MCC]

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.

Hi, yes I know it is!

I was specifically told more than 6 months ago that I don't need to worry about being around ill people or getting ill - my doctor said I will recover the same way as anyone else if I become unwell. And since then my dosage has gone even lower.

So it is probably best to see what your doctor says about your individual case.

[Jack]

my doctor said I will recover the same way as anyone else if I become unwell.
I think he is wrong. It is certainly not in line with any of the experiences of people on this forum. However, if suppression levels are low, I would agree that it is not something you need to take too many special precautions over. On the subject of this thread - I think that the risk of travelling to a "3rd world" style country is just far too great. I've known so many healthy people who have become ill while travelling and the added danger for Wegener's patients is that this sort of thing could easily cause a flare.

[MCC]

I think he is wrong. It is certainly not in line with any of the experiences of people on this forum. However, if suppression levels are low, I would agree that it is not something you need to take too many special precautions over. On the subject of this thread - I think that the risk of travelling to a "3rd world" style country is just far too great. I've known so many healthy people who have become ill while travelling and the added danger for Wegener's patients is that this sort of thing could easily cause a flare.

Hi Jack,
I'm just passing on what I have been told- and as I said, this is MY situation and as we know everyone with wegeners is different. Some are very ill, some are relatively well.

I gave my experience as the OP asked, I wish I was able to do so without being told it's wrong which so often seems to happen. As I also said, I think it's probably best the OP ask her doctor as he will know her medication and health the best.

[Jack]

No No, I'm not saying that you are wrong or criticising you in any way, just saying that I disagree with what your doctor has said. I've been immune suppressed for over 25 years now and it does not tie in with my own experience neither does it match with the reports we usually read on these pages. I've probably got a fairly jaded view of the medical profession because there seems to be a high degree of incompetence amongst all but the subject specialists.

I'm not sure that being told that you are wrong is at all common on the forum. Generally all views are welcome and simply add to the discussion without judgement being passed. If you got that impression from reading my post, please put it down to the inexact nature of Internet communication. It is all to easy to assign the wrong tone of voice to a posting.

[MCC]

Yes you're right, it is easy to misread things, sorry :)
I was told to be very cautious when I was having cyclophosamide - to avoid ill people altogether and not to fly for example but since then I've been told it's not a problem. I will ask my doctor on Tuesday when I have an appointment though as he is new to me and am interested to see if he has a different opinion.

[drz]

Does your WBC have much to do with how vulnerable you are to getting sick or infection? When my WBC was below normal like 1.3 or 1.6 I was told not to go out without wearing a germ mask and to avoid all contact with any sick people. When it rebounded back up to normal levels like 5 or 6 I was told I could go out without wearing a mask but to still avoid sick people when possible. Does this mesh with others experience.

[Sangye]

Yes, drz. The indicator generally used to show degree of immune suppression is the absolute neutrophil count (ANC). If the ANC is below a certain level you essentially have no protection from germs whatsoever and must wear a mask if you go out. We should not be in that category with the degree of immune suppression required to treat Wegs. If you are, then your doc is overtreating and/or the dosage is too powerful for you.

If you're on any type of immunosuppressants at any dosage, you are more susceptible to infection (especially by microorganisms that are not a problem for healthy people) and any infection can become quite serious. Even people who just use steroid inhalers are immune-compromised.

[drz]

Yes, drz. The indicator generally used to show degree of immune suppression is the absolute neutrophil count (ANC). If the ANC is below a certain level you essentially have no protection from germs whatsoever and must wear a mask if you go out. We should not be in that category with the degree of immune suppression required to treat Wegs. If you are, then your doc is overtreating and/or the dosage is too powerful for you.

If you're on any type of immunosuppressants at any dosage, you are more susceptible to infection (especially by microorganisms that are not a problem for healthy people) and any infection can become quite serious. Even people who just use steroid inhalers are immune-compromised.

Thanks for the info. I don't really understand ANC but found this reference about it. I only get or know the White blood count and generally I have been told i am not usually leukopenia but i seemed unable to tolerate the Cytoxan very well so they switched me to Azathioprine. I have been on it 10 days and it seems OK so far. I notice it doesn't irritate the bladder as much so that is an improvement for me.

Maybe this info will be helpful to some one who understands it better.

Neutrophils (aka polymorphonuclear cells, PMNs, granulocytes, segmented neutrophils, or segs) fight against infection and represent a subset of the white blood count. Neutropenia by definition is an ANC below 1800/mm3 (some sources use a lower value).

Absolute neutrophil count (ANC) of 1000-1800:
Most patients will be given chemotherapy in this range.
Risk of infection is considered low.

Mild neutropenia - Absolute neutrophil count (ANC) of 500-1000:
Carries with it a moderate risk of infection.

Absolute neutrophil count (ANC) of less than 500:
Severe neutropenia - high risk of infection. Remember that a reduced WBC is known as leukopenia.

The WBC consists of the following (differential):
Lymphocytes: 20-40%
Neutrophils: 50-60%
Basophils: 0.5-2%
Eosinophils: 1-4%
Monocytes: 2-9% (average: 4%).
ANC = Total WBC x (% "Segs" + % "Bands")
Equivalent to: WBC x ((Segs/100) + (Bands/100))

The ANC refers to the total number of neutrophil granulocytes present in the blood.

Normal value: ≥ 1500 cells/mm3.
Mild neutropenia: ≥1000 - <1500/mm3.
Moderate neutropenia: ≥500 - <1000/mm3.
Severe neutropenia: < 500/mm3.

Reference:
Ayalew Tefferi, MD, ed. Primary Hematology. Totowa, NJ: Humana Press, 2001.

[elephant]

Thanks for the information. This is handy for all of us.

[MCC]

I asked my doctor about this today during my appointment and he said as with many things doctors have different opinions, but he wouldn't see going to countries like Thailand would be a problem, he would just advise to take some precautions like using hand gel etc.

He said my immune system is running at 98-99% that of a healthy person and I need not fear being around ill people.

Of course this is his verdict on MY health so it may be different for other people.

[elephant]

Enjoy Mandy, I wouldn't mind coming to New Zealand. My son's soccer coach is from New Zealand.

[Jenny71]

Thanks for your input Mandycc. I will of course talk to my doctor too, but you give me hope. :biggrin1:

I think I have a strong immune system since my white blood count gets up to a good level very soon after a cendoxan infusion. And I been back at work since September and haven´t got sick yet, even though colds and stomach flue is everywhere around me.

Like I wrote earier is travelling a big part of my life and right now I really need something fun to look forward to. Last year was nothing but pain, fatigue and hospitals and now I´m sick of beeing sick and tired all the time so good times in a warm and sunny place would be wonderful. Especially since I live in northern Sweden where it´s cold and dark for four or five months every year.

I will see my doctor in two weeks and if he comes with some interesting information I will let you all know.

[gurinbasra]

Well, I just got back from India in November (I live in Canada) and this was a trip I've had to postpone for the last 3 years. I was finally given the OK by my dr in the summer 2010 and was able to get all my vaccinations - Typhoid (a real biggy in this part of the world), and then the usual Hep A & B, got a tetnus shot and I've had the monoco - something, can't spell it, but I also got the flu shot - all this stuff and nothing really hit me until I took Dukarol - vaccine against traveller's diaherrea. That stuff made me really sick, but the point is that I was protected from all the stuff I could pick up from there. I also took Malaria tablets whilst there. However, I do warn you, only go to those types of countries if you're feeling good, are steady on your meds without changing them for at least a year.

The other thing to check is with the travel insurance companies, I made sure I got my dr to put in his notes that he gave me the thumbs up to go because the insurance company said that if I got sick with the Wegener's and I was not OK'd to go by my dr, they wouldn't cover for anything.

Turns out when I got back I've been relapsing, going in for Rituxan tomorrow so I have to mentally get ready for that. The only positive thing I keep telling myself is that it'll beat coming into work with a -18 degrees C temperature out there in Calgary and lots of snow!

If you know where you're going to be travelling, go to a travel clinic, get a list of what vaccines you should be taking and check them with your dr and I found my local Pharmacist really helpful especially with the Dukarol and Malaria tablets. In the end, we all got our shots and we all stayed healthy!

[Sangye]

I'm just curious as to when you started flaring. Several of our members reported flares or disease onset soon after receiving vaccinations.

[gurinbasra]

Hi,

I don't think any of the vaccinations had anything to do with the flaring. From Jan 2010 I was beginning my decline of 10mg Prednisone and was down to 4 mg in July when I got a positive ANCA test - only up to 5.1 so he bumped my Pred back to 10mg. I was feeling fine and so far, as I've been waiting for the Rituxan, my ANCA is only up to 5.2 so looks like the bump up in Prednisone has kept me well. A few of the vaccines were started in the summer so it may have had something to do with it, but in my case, I've never been able to come off the Prednisone, so I suspect it's more that because most of my vaccines were after the 5.1 ANCA test and it only increased to 5.2 in November.

[Sangye]

I've probably mentioned this already but I hope your doctor isn't treating you based on ANCA.

[gurinbasra]

Nope, had an MRI in the summer that lit up in my left sinus because I complained that it was numb around there and now just had a sinus biopsy in November which showed active Wegener's in my left sinus! My ANCA was has only tested twice last year, once after the numbness feeling and the MRI and then one just after my biopsy to see how much it had increased. Can't say he's ever based it on just that as I haven't been tested for it very often, I think he's used it to confirm what I'm feeling and in this case to see how I'm doing with the Pred decrease. He did tell me though that I might be one of those people that never completely comes off the Pred! After my Rituxan tomorrow, in March we are going to try the decrease again - fingers crossed!

[Sangye]

Glad to hear that about the ANCA. I hope you can get off the pred. Dr Seo told me the people with bad sinus involvement are the ones who have the hardest time getting below 10mg or off pred. You'd think it would be those with severe lung or kidney involvement.

[Jenny71]

Thanks gurinbasra, I will go to the travel clinic and get a list of vaccinations needed and then discuss that with my doctor. I got vaccinated against hep A och B a couple of years ago that should last 20 years or so. But I don´t know when I can go overseas, I got diagnoesed in April and have still to increase my azatioprin. And then I guess I´m going to lower the dose in a couple of months, so being steady is far away right now.

And it´s nice to hear that you went to India, not known for good sanitation. I´m going to travel in Europe this spring, if I get my strength back, and even if it´s possible to get sick there too it´s not the same without the combination of new world of bacteria and really warm weather.

Sorry to hear about you relapsing. I hope everything goes well tomorrow and that you can feel positive about not having to "fight" the snow. This winter has been cold here too, below -20 C for a long time and that´s not so practical when one is trying to stay away from colds. But so far so good.

Best of luck!

[pberggren1]

Go to Portugal and Spain if you can. Both very beautiful countries and nice people.

[Sangye]

I lived in Spain for 3 years. It was before they joined the EU so I imagine things are very different. Nice country to travel in. I found my sweet dog Laika living on the street. She was my constant companion for the next 10 years and my favorite part of Spain. :smile1:

[Jack]

There are a couple of things that stop me from travelling abroad, the first simply being the amount of energy it would take to fly and make the connections. I could probably get around this fairly easily with help and a wheel chair, but it is still an obstacle when you have luggage with you and I know that it would take a day or two to recover.

The main stopper is my wife's fear that something bad will happen to me while in a foreign country. This is a distinct possibility since stuff seems to happen to me on a fairly regular basis so it is more secure to be near English speaking hospital staff and my own Specialists in particular. I can get insurance at a price, but it would still be a difficult situation and perhaps best avoided. The answer to this has been that my wife has been away with our children or friends while I stay with my sister. Not an ideal situation for either of us, but we both enjoy the break.

My sister says she is looking forward to me bringing the cat with me next time! :biggrin1:

[Jenny71]

I understand you Jack, travelling isn´t an option when the energylevel isn´t there. I hope to be in good shape in a couple of months, for being sick I´m quite well. :smile1:

I also thought about the language problem... but I hope that I will be okey if I bring written information in english and maby for example spanish and then of course the number to my doctor at home. And for me insurance is not a problem as long as I travel within the EU, but that is things to really check up before going anywhere.

I live in a rather small town, 35 000 people, and two of my colleagues have WG. Rather amazing, being an unusual sickness and all. And I consider my self lucky to have these guys guiding me, both have had it for 15-20 years. One of the guys have travelled a lot and have had no problems with it. But he also is quite well here at home, so there is always ones health status to consider before deciding what to do.

[pberggren1]

I understand you Jack, travelling isn´t an option when the energylevel isn´t there. I hope to be in good shape in a couple of months, for being sick I´m quite well. :smile1:

I also thought about the language problem... but I hope that I will be okey if I bring written information in english and maby for example spanish and then of course the number to my doctor at home. And for me insurance is not a problem as long as I travel within the EU, but that is things to really check up before going anywhere.

I live in a rather small town, 35 000 people, and two of my colleagues have WG. Rather amazing, being an unusual sickness and all. And I consider my self lucky to have these guys guiding me, both have had it for 15-20 years. One of the guys have travelled a lot and have had no problems with it. But he also is quite well here at home, so there is always ones health status to consider before deciding what to do.

Are you med free Jenny? I know my doc would not want me to go to unsanitary countries. And if I did go he would want me to be in remission, not neccessarily med free, and to also keep in touch if anything went wrong. I took a Spanish class in 2009 and found it fairly easy to learn.

[Deanne Hull]

Hi Mandy, i spent a month in Europe in September all the way from Australia and came back in remission, i would definately stick to
countries where there are good medical care just in case. I was very careful, used an awful lot of hand sanitizer and took a big
supply of antibiotics as well. My specialist said to wear a mask in the airport and on the plane. I wouldn't be going to Asia unless
you were really well. Come and visit us down under, but avoid Queensland at the moment due to the terrible floods over there.

All the best don't let this disease stop you from living a good life.

[Jenny71]

Are you med free Jenny? I know my doc would not want me to go to unsanitary countries. And if I did go he would want me to be in remission, not neccessarily med free, and to also keep in touch if anything went wrong. I took a Spanish class in 2009 and found it fairly easy to learn.

I´m not med free and the recommendation is to keep taking meds two years before even considering getting med free, so hopefully I´ll be free in the summer of 2012. But I will ask my doctor if they consider me beeing in remission now, which I think I am. My ANCA been okey since June and all the other tests are also within a normal range.

I took spanish in high school, but I nowadays I couldn´t do much more than order a beer and say thank you. Maby count to ten. So I will have to freshen up the vocabulary a bit. And probably buy a dictionary :-)

[pberggren1]

Jenny, why do they say 2 years before going off meds?

[Jenny71]

A two year treatment plan, as a minimum, is standard here. Dosage and what medications is of course set after the individual. My doctor says that they´ve seen that it´s what works best to get a stable remission and for me it´s important because the "mothership" of inflamation (my english isn´t good enough to write about it...) is not in the lungs or airways like it is for many wg:s. Mine had silently grown outside the lungs giving no symptoms. Finally it was huge and caused a major problem all of a sudden.

The only way to monitor it is by ct-scan and as you probably know it´s not good to get to many of those. So better to be safe than sorry and give it a hard time by medication. I´m not gonna keep all medication for two years, for example I´m getting off bactrim soon and also hopefully it´s possible to get off pred. But azatioprin and bloodpresure medication are for the whole period. What happens after that I don´t know, deppends on my health then I guess.

The swedish experts meets with european colleagues regulary so I guess it´s based on a lot of research and experience. How the share knowledge world wide I don´t know. But hopefully they do!