[mamoosh]

Hi everyone

I am quite new to lupus and my consultant has advised me against all travel to tropical countries due to the possibility of UV making the disease worse (at the moment it is quite mild). I don't mind for now but in the long term this will be a problem as it is part of my job in some respects. (Obviously if I get worse I won't want to go anyway.) I am fully prepared to undertake major UV protection, stay indoors during peak sun etc. I am not a sunbather anyway.

I wondered what other people had been advised about travel and holidays. How is it any different for all those folk who already live in very hot climates anyway - I guess you restrict going out in the middle of the day but your doctor doesn't advise you to emigrate??? Should I only go on holiday to Greenland from now on? Where do you folk go when you need a break?

Thanks everyone
Mamoosh

 

[Fairy]

Hiya,
I spent most of march in new zealand, a country with high uv thanks to a lack of ozone. I had a brilliant time - I knew I was taking a bit of a risk, but I wore lots of sunscreen and hats which seemed to do the trick. My doctor knew I was going, and he didn't say a word (although he does know me pretty well, and probably realises I would have ignored him had he said I couldn't go :hehe

I was knackered when I came back, I've been aching since, and my rash is worse but I'd do it all again tomorrow if I had the money.

take care.

 

[sam101360]

Mamoosh:

I live in a tropical environment (Florida USA). I just take the necessary precautions - 70 Sunblock, UV clothes and eide brimmed hats. I avoid the sun from 10AM - 4PM as much as possible.

It really cannot be avoided and should not stop you from living life, as long as you are cautious, hydrate frequently, and rest as necessary.

Stephanie

 

[elisabethm]

Hi Mamoosh i go on holiday every year we are of in 3weeeks time to Greece.I have also been to India so i would not stop my holidays. Elisabeth

 

[nadiasophia]

hi

dont stop going on holiday! we need them for serious rest and fun!

just make sure that u don go out in the sun too much. cover up and wear high spf. i go away every year and always come back feeling ' normal'!

Nadia

 

[lazylegs]

My husband and I go wherever we want. In the morning we go out then at midday I nap. In the early evening we venture out again nice and rested. Naturally I take all of the precautions such as sunscreen, hat, long sleeves, plenty of water. If the heat is too much we plan indoor activities. In case of a flare up my doctor gives me extra Prednisone.

Take care,
Lazylegs

 

[Lily]

Hi,

It's not practical to try and do that. I mean if you are sensible and take all the precautions above then that's about all you can do. You still have to live your life and if a flare happens despite all that then so be it. It's possible to calm down that flare down when and if it happens.

I live in Australia with a very high UV index (hole in ozone layer), and it would be impossible to advise someone to stay indoors all the time and hide under a rock I have been on holidays and taken precautions, even taken an umbrella for extra protection from blazing sun if I couldn't avoid exposure. I am pretty photosensitive and I did flare, but last time I went I didn't flare until I got home. The holiday itself was necessary for my mental well being and stress reduction. So everything has to be weighed up.

We have Lupus, it doesn't have us. There are ways around everything is we are sensible.

love
Lily

 

[oesa]

I agree with everyone above. I've done a fair bit of tropical travel (three trips to South America, and a half-dozen trips to the Southern US) and all you can do is be sensible, take any necessary pre-trip precautions and manage any symptoms or a flare if they occur.

Holidays are essential to our well-being (in my humble opinion), and with my Raynauds, sitting on a chairlift has lost some of it's fun quotient. It's also winter for about 9 months here, and sometimes I really just want to be somewhere warm in February!

You do have to still live your life, and if sunny destinations are important to you, just take reasonable precautions, and then don't worry too much to have fun!

Lisa

 

[mamoosh]

Thanks guys (or ladies!). At the moment I have 'lupus-like disease' ie. mild form and I guess my consultant wants me to avoid anything that might trigger it further. But he mentioned avoiding travel to hot countries until I hit the menopause!:lol: This year we have no plans anyway but if I'm ok then I think I'll just ask him again anyway and impress on him how much that will impact on me personally/how responsible I will be. All my hobbies are based around travel or foreign countries eg. music, books I read, even an MSc I have started etc. In fact I have already had a trip abroad, didn't mention that to him! I was quite glad it was February and the weather was quite mild for that time of year anyway. At the moment I am not exhibiting photosensitivity but I do feel worried about those UVs.

I have no complaints about my consultant otherwise, he is very nice and is an expert on lupus. So him restricting my travels worried me. I'll have to have another word with him!

Mamoosh

 

[Clare.T]

Pleased to meet you mamoosh !

In the many years I have been reading about lupus and reading forums I have never heard of a doctor being so insistent about UV before ! Advising great prudence yes but I agree with the others about how important it is to lead as normal and fun a life as possible and not be blighted by fears of 'what if'.
We can't hide ourselves away and have to learn to take considered risks, sometimes by bitter experience. The comment about waiting until after menopause is really bizarre although some doctors think that disease activity ceases after menopause. That doesn't appear to be always the case though.

I never heard that there's any way of guaranteeing that lupus will not worsen by avoiding whatever and some of the potential exacerbating factors simply can't be avoided

Some of the top lupus doctors say they think the photosensitivity angle is greatly exaggerated. It's a pity in my view that he has said this so uncompromisingly, as it puts you in a difficult position . If disease does worsen you are more likely to blame yourself but in fact it might have worsened anyway. It can never be proved. And good patients always want to follow doctors orders.

Have you started on Plaquenil ? That helps reduce photosensitivity a little and is so important as a disease modifier

All the best
Clare

 

[Surferboy]

I must admit, I too am totally confused about the entire photosensitivity issue.

I had 1 rhumy tell me that he doubted very much that the sun would have any major implications on me flaring - if any at all! Clare T, is this what you mean when you said "Some of the top lupus doctors say they think the photosensitivity angle is greatly exaggerated."

But then my other rhumy told me the exact opposite "be careful of the sun"! - but said that if I covered up, put on the sunblock I should be ok.

So, quick question in relation to this topic - if we put on lots of sunblock BUT wore a t-shirt and long shorts in hot weather (long sleeves would be very difficult in temperatures above 25oc) would we have sufficient protection? Oh, and a hat too

Has there been any medical proof that UV / the sun brings on flares? If so, are flares bought on to every prolonged exposure to the sun? I have a very strong suspicion that my Lupus was triggered by the very strong sun exposure I got when I went skiing.

 

[Lily]

Hi surferboy,

Here's just one article about it:

http://www.thelupussite.com/forum/showthread.php?t=73402

if you do a Google search on the net you will come up with many articles about it

love
Lily

 

[GCCH]

Everyone with lupus should be vigilant about avoiding unnecessary UV exposure. However, unless you are super sensitive, that doesn't mean you can't do anything in the sun! My specialists tell me that as long as my disease is not active, I can do whatever I want, provided that I use common sense (i.e., cover up, use sunscreen, avoid peak periods, etc.).

If you are newly diagnosed, it makes sense to be extra careful. However, with time, I think you'll soon realize your own physical limits and be able to better gauge how much sun you can tolerate.

 

[sam101360]

Hi:

I take very cautious precautions, as I live in Florida. I apply 30 sunblock as most people put on skin lotion (every morning). I stay in the shade and never in the sun at peak times.

I didn't think I was doing a bad job at all.

I haven't had a skin rash (other than the ususal butterfly) in over 2 years!

Two weeks ago, I developed a small spon on my neck, as the days progressed it continued to grow, when it was about the size of a dime I called my dermy...he saw me and said I am failing at sun control.

My lesion is now bigger than a hlaf dollar and quite red...It is a lupus lesion, confirmed by biopsy.

He said - even 70 is not good enough, although it is sufficient, also he said you get exposure even in the shade it's called reflective UV rays.

I am not photosensitive....but I guess I do have a reaction to the sun...

He said that no matter what with Lupus you must be extra careful as the combination of medications and disease increases your suseptability to sun induced flares. These are not always noticable and can be cumulative and induce a flare that may not even be skin related.

This is only my Dr's opinion, however I respect him. He is a Dermy's, dermy and specializes in skin lupus.

Stephanie

 

[mooks]

Heya,

Just thought I'd add my own personal experience here. I was diagnosed with "mild" lupus jan 2007...that july i went on holiday to mexico and used factor 15 and spent a fair bit of time in the sun-not believing the photosensitivity thing (I had always been an avid sunbather and never had problems before) but by a week into the holiday I couldn't eat, could hardly walk had rashes and a fever. I was sooo sick. Rushed to Rheumatologist the second I got home and he said my lupus had gone from mild to moderate. He hasn't got on top of my SLE since. I made my disease so much worse and its the worst mistake I ever made in my life.

However, I went to Death Valley, Grand Canyon, Mojave Desert, Las Vegas and Los Angeles in sept 2008 and I used factor 50+ Allergy sun cream, was VERY sensible in the sun and had a fab time..didnt get sick at all!! So it IS possible to go to the hottest sunniest places on earth without endangering your health!!

Just be sensible and don't disbelieve the docs who say stay outta the sun!!

 

[Sage Hen]

Hello,

Everyone taking Cellcept, need take extra care also, to avoid sun exposure, for skin cancer reasons.

I personally, get very ill very fast with just as little as fifteen minutes in the sun, even with total protection.

ox Sandy

 

[mamoosh]

thanks

Thanks everyone, that is really encouraging information. I wish you all happy holidays!