I will be going away to a hot country in March (sadly essential family stuff) and hope that any travellers with Lupus would share their tips for keeping safe please. I have travelled there before but it's very different now as I am very sun sensitive - rashes from head to toe, very angry livedo and sickness/ dizziness if I stay in direct sunlight for too long or go without sunscreen. I've checked the average temps for the period we're travelling and it's usually in the 80's with 10 hours of sun during the day. I don't want to spend the entire time hiding indoors and will also swim. I use Nivea factor 50 spray here in the UK sunny months, reapplied every 2 hours if I'm out and about and wear long sleeves, a hat and sunglasses. I do avoid being out at all at the hottest times and carry an umbrella for shade where there is none. I realise that I will need to take extra precautions so any advice re products/ clothing would be much appreciated. I'm looking for lightweight SPF treated fabrics for clothing and really good sunscreen. I'm self employed so not breaking the bank would be good - willing to pay to stay safe though ☺
Thank you folks ❤
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You may find our blog article about coping with light sensitivity helpful. It has loads of tips and links to suppliers for helpful products - lupusuk.org.uk/coping-with-...
We also have a blog article about going on holiday with lupus which has some useful information - lupusuk.org.uk/going-on-hol...
Thanks Paul, there's so much helpful information in the blog articles. I'd already organised insurance as my husband and I both have health conditions but I really needed help with sourcing clothing etc. Having had a look at both articles, I realised that I hadn't even thought about things like lighting on the plane - it's about 12 hours flying with one change so that's a long time to be under uncomfortable lighting!
Thanks vitalspark, it's easy to forget that it's not just your face and body that need protection in the sea. I'll give the Sunsense protection a go. I also notice that there are hair and scalp protection sprays out there too. In the far off days before the sun became problematic, I clearly remember burning my rear end whilst snorkelling as I forgot to sunblock it - a lesson I won't forget! 🔥🔥🔥
I've been trying to figure holidays in the sun & if I can get back in the sea without throwing my body into a flare... I have purchased sun protective clothes, wear cotton gloves when driving (fingerless) to ensure my hands are covered. Good sunglasses a must. I should mention that rash vests (especially for swimming ) & are usually good protection may consider buying it here as long sleeves maybe more available with the wetsuit folks here. also actually found gloves for the sea same material as rash vest (haven't seen them since for sale). I collect scarves now cotton ones for the summer... Let us know how you do, maybe I will brave it this summer ie swimming again..like you sun & I are sadly not compatible 😨 😎 enjoy ml
Maggielee, I'm hoping that you'll be able to get back to holidaying and swimming and I will definitely post an update after the end of March and let you know what worked and what didn't. I'm shopping for a rash vest for the beach and have put scarves on my list too. Thanks ❤❤❤
I refuse to let my sun sensitivity stop me travelling . I get Sunsense, factor 50 on prescription, wear long loose trousers in linen or similar fabric, long sleeved shirt (or a rash vest) over a tee shirt ( so I can take the shirt off when indoors or at night), big brimmed hat while outside and covered shoes. And as a previous comment has mentioned always have a lightweight scarf in your bag. I’ve been to Florida and all over Europe since I was diagnosed in temperatures up to almost 100F. Must admit I haven’t tried swimming! One more point from my husband - set your alarm half and hour early for all the preparation! And remember it’s the sun, not the heat that affects you so at night you can dazzle without the layers. Have a great time!
I love your adventurous spirit Barbara17! I feel much more confident about managing after reading your post, especially knowing that you've managed in places with strong sunlight and high temps. Your husband's tip made me laugh - going anywhere now always takes longer and my lovely long suffering husband already sets the alarm well in advance ⏰ Thank you ❤❤❤
I spotted your post yesterday but didn't have a chance to reply.
It looks like you've got everything under control really and have had some great replies.
I was diagnosed in 2013 and have traveled abroad on holiday and so understand how you feel. It's different to preparing for a sun holiday pre lupus! So much more to remember and it adds unwanted anxiety.
I went to Italy in 2016 for 2 weeks in August and closer to the time was really rather scared and thinking what on earth have I done! Luckily for me I was in transition with meds - increasing from 1g a day of MMF up to 3g and my Dermy prescribed a 5 week course of steroids to cover the transition and this meant I was on steroids whilst on holiday and this helped me coped no end. I now have steroids at home to self medicate when I need to and so when I go abroad this year I will be taking those, just in case.
I use Ego Sun Sense sun cream, factor 50+ which is prescribed by my dermy originally and now on my repeat from my GP. They do a smaller roll on bottle which is very handy for your hand bag and you can re apply to your feet and hands etc with too much fuss.
I wear sun protective clothing and rash vests, thick trousers that the sun doesn't shine through, floppy sun hat, sun glasses. The only parts that are exposed are my hands, face and feet. In fact I don't wear sandals every day, as I find this too much. So I'll wear trainers too, to give my feet a break from the sun. I also carry a hand held parasol (Factor 50+ protection) in case we end up somewhere with no shade. But I always sit under an umbrella in a restaurant, or even inside to eat and under umbrella by the pool side, even with all my layers and thick clothing.
Staying hydrated in even more important to me as well.
The clothing I buy has come from a mix of sources.
The rash vests as we call them here (we live by the sea and the surfers wear them) are sun protection clothing basically, Factor 50+ built in. These can be purchased from Amazon and are made by Animal and Billabong etc. I try to buy plain ones and then wear a lose blouse or t-shirt over the top (so I look relatively normal). I always buy long sleeve and these come down far enough to cover my wrists too.
However more recently I have found really pretty ones at Boden. They are more expensive but are lovely designs and can be worn alone - no logos or labels. Look like a casual summer top.
Finally I found an on line company called Purple Turtle. They do sun protection clothing too. Craghoppers do shirts etc with Factor 50+ protection. There are often sales on here, so keep an eye out.
I have been told that I must wear a hat every time I go out too - so now have a selection of hats for summer and winter. I think this has helped the skin issues and hair loss / thinning since I have been doing it.
I hope I have helped a little.
Any questions please ask.
Best wishes
Wendy x
By the way, I find the sun sense a little greasy on my face and so over the last couple of years have tried a few alernatives for my face, so if you want any tips on that please ask.
Wendy39, thank you so much for taking time to reply and I really appreciate the time you've taken to include all of the links. Lupus really does affect areas of your life that you've never had to think twice about before!
I'll have a look through as I need to get cracking with getting the essentials together. I live by the coast too so know rash vests. I feel better about spending on one or two now. I was worried that they would be uncomfortable for daywear rather than just swimming/beach but as you and others commenting on the post find them comfortable then I'm happy to give them a go.
I'm glad you mentioned the sunscreen. The little roll-on sounds ideal for taking onboard in hand luggage. The reason I use the Nivea spray is because it's light and less greasy. I even tried baby sunscreen early on but I ended up looking very strange as my skin and hair are darker so I ended up looking ghostly. Any tips will be gratefully received. Thanks again ❤❤❤
I know what you mean about the white face look. I am fair and blue eyed and the factor 50+ makes me look like a dead woman walking! Not attractive at all. I'll go through what I have found as an alternative.
When I went to Italy, I was on 20mg a day pf steroids for 2 weeks and then tapering for a further 3 weeks - so 20mg for 2 weeks, 15mg for a week, 10mg for a week and 5mg for a week. But like I say, this was quite high as trying to get my lupus under control and waiting for the MMF to kick in - which took a while. I was very lucky that my then Dermy understood my concerns re my holiday and gave me the prescription. Now I am on Hydroxychloroquine, MMF and Mepacrine and so the steroids I have at home in case of flares, to self administer as smaller dosages. I have been advised to take 5mg for 2 weeks and 2.5 mg for a further 2 weeks. That works for me. Everyone is different and doctors have different attitudes to steroids, but worth you asking. If you have used them before and they work for you, then your doctors may be willing to help you out, to help you cope in the sun. There is a lot of information on here about being on 7.5mg or less a day long term being a sort of level where the risks are less than higher doses. Of course steroids are not risk free but that means my 5mg and 2.5mg for a 4 week total, now and again, are not considered a worrying dose.
Anyway, Factor 50+ for your face.
Here's what the Ego Sun Sense bottles looks like. I get mine on prescription and if you are sun sensitive with lupus, you should be able to as well. As your GP or Dermy.
Here's the tinted one they do for the face. This is OK for during the day, if you aren't wearing make up on top. It's too greasy as a base for make up, but fine on it's own. It's tinted and so you don't get the white face look.
A friend who wears Factor 50+ daily - not for lupus reasons but to help stop the aging process, recommended this one. Heliocare 360. fluid cream. This has a tinted matt finish and can be used on it's own or as a base for make up, so day or night. I have started using this every day. It feels lighter and drier on the skin.
So that's my day time protection. And if it's summer time, I'll use the Helio day and night. But during the winter, if I am going out for an evening (rare but even so), I tend to leave the Helio off and use Benefit Dream Screen SPF45+++ oil free as a base for my make up. Benefit also do a powder that is SPF 35, I think it's called Hello Flawless. But I wouldn't wear these cosmetic items on their own during the day, without the 50 underneath, as there is evidence to suggest that when applying make up, we don't put as much on as we need to get the high protection.
Finally, Lancome do a tinted liquid in a compact, applied with a sponge, that dries like a powder, SPF 50. But again, I wouldn't wear this alone during the summer, I'd wear it on top of the Helio.
The Benefit and Lancome stuff isn't cheap but as I don't go out very often at all, they tend to last me a very long time. I'll ask for refills etc for my birthday or Christmas etc.
We are all different with our lupus and our sun sensitivity is on a spectrum too. So it's really finding the protection that is right for you and your skin etc.
But I hope that I've helped and that you can enjoy your holiday!
Wendy, this is brilliant, thank you so much. Sorry I didn't answer earlier - it has been one of those weeks. I didn't realise that these products existed. This is still relatively new to me so information like this is so important. I'm sure this thread will be really helpful to many other people. I think that I will be making an appointment with my GP to talk about prescription sunblock and a very low dose of steriods. I have been taking hydroxychloroquine 200mg (based on weight) for 5 months along with pain relief. So far I have done without steroids but I think as a precaution, a short course as a preventer won't hurt. I went out for a beach walk in the spring sunshine yesterday, covered myself in factor 50, had layers of clothes on for the cold but ended up with swollen eyelids, sore joints, itchy skin and throbbing ribs anyway! Off for nerve conduction tests at the neurology clinic today so will present as a pretty sight.
I am very interested in the Benefit and Heliocare products.When I do wear makeup, I wear a light liquid SPF foundation usually mixed with a little moisturiser, over a sunblock base. This is fine but can be a little greasy if I sweat a bit. I have some scarring on my chin which darkens very quickly if I don't protect the skin so most of your recommendations will help with that. I will give them a try and come back with an update in April.
I forgot to add that I will be asking about the steroids, thanks for that too. I really do break out in spectacular rashes with joint pain so this would help and stop things from getting worse.
Hi there, good advice above - just a couple of thoughts from me. I travel to Turkey each year and find that because it is a hot country, there is always shady spots to sit. I do prefer 'hard' shade as the canvas in umbrellas is not protective enough for me. I found a lovely parasol on line from Amazon, it came from Honeystore and is like your own personal shade and cooler than hats which can make you sweat more. Also, do keep well hydrated and don't forget to have salt on your food and the occasional ice cream for the sugar! Have a safe time.
Thanks for the great tips Heatheric. I have just had a look at those parasols and will be treating myself to one - they are gorgeous as well as being practical 😊 Good to know that ice-cream is part of the essential survival kit 🍦❤❤❤
In addition to blocking as much light as you can (find shade) try multiple layers of SPF + all over your body and more often. On a normal day I respray every hour if I’m in the sun.
As for heat, water, water, water.
For pools, I have a wetsuit and use a cap. Totally helps block the sun and let’s you stay in longer. Best investment I’ve made!
Thanks katydid, I think I'll be taking a few different sun protection products with me as I've had some great advice. I I need to get into the habit of hourly top ups. I haven't worn a swimming cap for probably 30 something years but it looks like I'll be trying it out again❤❤❤
I tried a swimming cap and admittedly my hair got in a fight with it. But, I was able to find a very comfortable, durable black wet suit 3/4 body for about $80 (USD). I know they sell many on Amazon and other online retailers.
If you haven't tried it, Sun Bum is a great brand. They have a fine mist spray that goes on really well and smells good. It's all natural, so no skin irritation.
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