[SarahJ3]

Hi,

I've only recently been diagnosed with Lupus and I'm on a 3-month course of Prednisolone. The information sheet about the tablets says that I should not have 'live' vaccinations. Combined with being told to use factor 60 spf sun lotion, it's left me struggling with where to go travelling.

I've always wanted to travel more and I'm scared about my options being limited. But at the same time, I'm eager not to aggreviate the condition, as my dad has had many serious complications with his lupus.

So, where is okay to travel to from the UK (not Europe - thinking further afield) - ie, which countries do you not need live vaccines for? Should I stick to countries with good health care in case I take bad during the trip?

I had also considered learning to sail a yacht in Greece pre-diagnosis, but with the reflected Sun off the water and limited shade, I'm thinking that's probably a bad idea now

Any help would be appreciated. After the year I've had I really need a break!

Cheers,
Sarah

 

[Lily]

Hi Sarah,

I don't have time right now to go into specifics but found this site for you which is pretty in depth, there is even another section that will tell you what vaccinations are needed for specific countries.

http://wwwn.cdc.gov/travel/yellowbook/ch9/immunocompromised.aspx

it seems it depends on the level of immunosuppression, so there's info there on the amount of Prednisone to take into consideration.



hope this helps,

love
Lily

 

[Clare.T]

Hello Sarah and welcome to the forum !

I'm sorry about your diagnosis but hope your lupus isn't affecting you too badly.

It would be a good idea to take out a travel insurance, in fact it could well be essential to getting any sort of health care outside Europe. Even in countries with reciprocal health care arrangements with the UK you are only entitled to the benefits of the system available to the residents of the country which in some places could be very poor. With an insurance you can usually speedily access private health care which you might need, god forbid, for reasons other than lupus.
Sunscreen is only one weapon against sun exposure; the others are avoidance in the hottest time of the day, and protective clothing. One rule of thumb is to avoid the sun until your shadow is as long as your height.

UV reflects from light surfaces: it is at least half as strong again reflecting off water. It seems generally agreed these days that UV exposure can worsen disease activity even if the skin is not affected.

Live vaccines are usually not recommended for anybody with lupus regardless of the degree of immunosuppression.

I am wondering what your treatment plan is. Prednisone should only be used for as short a time and at as low a dose as is strictly necessary because of the unpleasant short term side effects and the serious longer term side effects. Usually people are started on a disease modifying medicine usually Plaquenil

All the best
Clare

 

[SarahJ3]

Thanks for the info Clare and Lily - this a great forum!

I am on Plaquenil as well. I think after suffering with back pain, swollen wrists and tender upper arms for 3 months - with NSAIDs and a steroid injection given by my GP not suppressing the inflammation - the Rheumy is keen to get the inflammation under control. So am I!

BTW, after A LOT of research, I have decided on a trip to Japan You hardly need any vaccines at all for Japan, and you don't need any live vaccinations. I think it's also nice to head somewhere where lying on the beach isn't the main focus of the hol. Plus, the culture and archetecture are so different to anything I've ever known!

It's going to be very hot at the end of Aug/early Sept (particularly if I spend 3 days on the outer Japanese islands of Okinawa, near Taiwan). However, I have my factor 60spf sun lotion, a hat, sunglasses and tend to avoid the midday Sun by choice anyway. You can't hide from the Sun forever. I'm determined not to let this stop me from doing things that I want to do. Just need to do a bit more planning and take extra care.

My recommendation to anyone who has been recently diagnosed is to plan a big trip somewhere. It's really been nice to have something positive to talk about and look forward to.

Sarah

 

[smarsh]

Hi!
I was diagnosed with lupus 4 years ago (aged 20) and was similarly upset to realise, only recently, how much that might restrict where I could travel. I had hoped to eventually work in Africa, especially Senegal, and as you can imagine getting lupus more or less shattered that dream. Still, at the same time I realised how precious all the opportunities I DO have are. And as you say, it is important not to be TOO cautious and to still get on with your life and seize the day!

Something that encouraged me was the realisation that you can often travel to places where you allegedly need a yellow fever vaccination without one – and all the while being completely safe. This is because there are a lot of countries (Brasil, Peru etc) where you need the vaccination for going to jungle regions but not for going to the towns, beaches etc. So I still fully intend on going to Macchu Pichu in the near future, for example, but I won’t go anywhere near the jungle there!

Enjoy your trip!

Sarah

 

[oesa]

Hi there - I've done a fair bit of travel, and the yellow-fever recommendation is a good one. I've been to both equatorial Guyana and Peru, and have not had that particular shot, but I've had lots of other ones!

My other piece of advice is to consult a specialist in travel medicine - they can give you very specific recommendations about where the endemic zones are in particular regions, so for Guyana I just avoided the endemic zones for the most part (I did risk a one day trip to the interior to see Kaiteur Falls, which was TOTALLY worth it. I was well covered up and wore enough DEET to protect the entire group...) They can also look at alternatives to live vaccines - typhoid for example comes in both live and non-live (dead?) forms.

Sarah, I did a three week Peru/Macchu Pichu trip last fall, and it was AMAZING. I'm telling everyone I know who travels that Peru needs to be on their life list! PM me if you're looking for recommendations - in particular, the tour group we did the trek with was fabulous!

Lisa

 

[ElephantEyes]

Oh are you not supposed to get a yellow fever vaccination when you have lupus? I got one last year before I went to Uganda and I was fine. At the time I was only taking plaquenil and I didn't suffer at all. I had a great trip - got to track (and see) silverback gorrillas!

 

[SarahJ3]

Hi,

Thanks for all your replies - it really helps knowing I'm not the only one going through this.

Elephant Eyes - I think it depends what medication you're on. I'm currently on oral steroids. If you're on a high dose of steroids, I think live vaccinations should be avoided altogether. At my dose (10mg) my specialist has told me that I can have them, but that they probably won't be effective, so it's my risk to weigh up. In future, I would definitely talk to your specialist before having any vaccinations - particularly live ones.

Sarah