Sunscreen for SLE: Hi guys, Does anyone have... - LUPUS UK

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Sunscreen for SLE

ButterflyEffect96 profile image

Hi guys,

Does anyone have sunscreen prescribed for their lupus? I did ask for it to be added to my medication as I have SLE but feel like I’m bugging my docs if I ask again. I ‘experimented’ the other day and went unprotected in the sun (only for 10minutes) quite soon I developed a horrible lupus headache, became extremely fatigued and developed joint and chest pain. Now I know it’s essential for me to have skin protection on but it’s extremely expensive to be spending alongside buying meds and supplements. If anyone could help me out on how to go about it and recommend the best lotion for lupus patients that would be great.

Thanks 😊

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26 Replies
Ianrussell69 profile image
Ianrussell69

I use a minimum of factor 50 been outside for about 2hrs today my face is red and sore and I’m aching my own fault just thought I’d be ok

eekt profile image
eekt

I have it prescribed...ex-GP's eyes bulged when I asked, because he put everything I said down to 'health anxiety' (that's why he's an ex :) )...it's recommended in the BSR Guideline for SLE, so print that off and show it to your GP...they have a factor 50 sunblock on the system, and if there's a medical reason, they have to prescribe xxx

ButterflyEffect96 profile image
ButterflyEffect96 in reply to eekt

That’s great, I don’t know how to thank you enough! It just seems ridiculous that we have to beg for treatment. It was only the NHS website which mentioned that lupus patients are eligible. I mean I even experimented just to try and prove myself wrong 😅. Bless you xxx

eekt profile image
eekt in reply to ButterflyEffect96

It should be automatic at diagnosis...this having to check for ourselves - and indeed experiment, uh - is so-o-o-o-o exhausting when we're already at rock bottom...

Sunsense SPF50 is what came up on my ex'GP's system!

Wishing you a sunny, rash-free summer, when it comes! xxx

PS lovely name!

ButterflyEffect96 profile image
ButterflyEffect96 in reply to eekt

That’s what I would think. It really is 😭. Oh thank you! I have a butterfly tattoo which I got a year before being diagnosed coincidentally hahaha. Wishing you a safe summer too!

Xxx

Bronn profile image
Bronn

My GP was very helpful and sympathetic and I use Sunsense face daily as I suffer with uv/ub sensititvity since diagnosed with Lupus, I have been using even in the winter because I get such a bad reactions. I also use Sense 50+ for the rest of the body. Works for me. I'd give your GP another go and put your foot down. If you cannot get anywhere with your GP ask your rheumatologist to drop them a line. I agree with eekt they HAVE to prescribe, it's a medical necessity. Good luck.

ButterflyEffect96 profile image
ButterflyEffect96 in reply to Bronn

Sunsense is the one I opted for, I’ve bought a bottle but realised how expensive it will be accumulatively 😭. I will do, thanks!

Frosty1960 profile image
Frosty1960 in reply to ButterflyEffect96

I have also been prescribed La Roche-Posay, it was also very good for while.

Unfortunately even these don't work as well for me now, I have photosensitivity testing and drug interaction testing appointment to try see if can find answers.

Hopefully get out the house this summer if they can help.

ButterflyEffect96 profile image
ButterflyEffect96 in reply to Frosty1960

I didn’t know that was possible to be prescribed. I will definitely look into it, I just haven’t been out much the past couple of weeks 😭

Frosty1960 profile image
Frosty1960 in reply to ButterflyEffect96

Im in Scotland so get prescriptions free not sure about other countries but can be costly if having to buy, your dermatologists or rheumatologist can send Gp a letter to make sure you get it.

redredblue profile image
redredblue

I got some through prescription. Don't worry about bugging your docs they are their to help you and should listen to your needs. Sun sense is pretty good, you can also get tinted ones that may not look so pale on skin.

Nickymck profile image
Nickymck

Hi. I have factor 50 roll on prescribed. I would ask your gp again . Good luck x

Ncut profile image
Ncut

I have had sunscreen on prescription now for 15 yrs I usually try to keep most of my body covered and wear a hat. The sunsense factor 50 works quite well but I still need to be very carefull however I do find the Sunsense rather heavy and thick to wear daily so for my face I use Claris factor 50 which is very light and the bottle is very small but lasts for ages so fits in my handbag easy, I would get 7 months out of the one bottle just using it on my face. Hope this is some help.

Nikki246 profile image
Nikki246

I was told you have to buy your own. I got a tub of F50 face sunscreen from our local £ shop. It definitely works and the tub last me months.

BillScotland profile image
BillScotland

My rheumy gave me a letter for GP and now get prescriptions for sun sense 50 factor.

Thankfully I don't pay here in Scotland. I have 9 prescriptions.

You should always use sun block but sunglasses are important too!

Barbara17 profile image
Barbara17

Hello. Yes, I have Sunsense Factor 50 on repeat prescription. I use it year round on sunny days on my neck, hands etc.

Yellow5 profile image
Yellow5

Thank you for posting this question , i was going to ask the same thing today!

Hope you get a positive response from your GP.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi ButterflyEffect96 ,

As other members of this community have said, if you have a diagnosis of lupus then you should be eligible for high factor sunscreen to be prescribed by your doctor. If your GP is reluctant then perhaps you can ask your specialist nurse or consultant to write to them?

If you would like any more information and advice about light sensitivity in lupus, please take a look at our article here - lupusuk.org.uk/coping-with-...

ButterflyEffect96 profile image
ButterflyEffect96 in reply to Paul_Howard

My rheumatology appointment is next week so I will get a letter just in case.

Thank you 🙏🏼☺️

Kerrclan profile image
Kerrclan

Hi again ButterflyEffect96. My Rheumatologist prescribed Sunsense factor 50 suncream from my first appointment. Instructed to wear all year round. My reaction to sun and artificial lighting is severe. Over the years I have experimented with various creams. I now prefer Boots no 7 factor 50 on my face and is regularly 3 for 2. Also feels nicer on face and neck. I also use factor 100 Neutrogena on hands, wrists and chest in intense hot sunny weather. I cover up all year round. Don’t forget hands and neck. I carry a scarf to cover up most of Year. I find this time of year worse as sun is so low. You can pay £100 to have car windows blacked out but make sure as per legal guidance. I also invested in blackout blinds at home as my house is south facing. It’s all very expensive especially since I no longer work but my father in law stocks me up on suncream. Also Amazon sell factor 50 lined umbrellas which are great for walks but now my arms hurt too much to carry

Ask your GP to add to repeat list.

Kerrclan xx

Frosty1960 profile image
Frosty1960 in reply to Kerrclan

You can only get rear and rear side windows tinted therefor of no use i have enquired as was going to have it done myself.

Thereisalight profile image
Thereisalight

Hi i don't have sle but my dermatologist suspected scle after a very suspicious rash following a trip to Spain and have anti ro antibdy. I find sunsense really heavy ad white and hard to put on regularly without lookin ridiculous white and sticky. Dermy recommended anthelios xl from la roch posay which is nice on the skin and you can get on prescription although in small tubs for face. On dermy in his team said the boots lotion with factor 50 and with uva 5 star rating was good. I now use this as cheaper. I have used it in Spain in the middle of a hot sunny August and i managed ok. I am sensible and avoid the midday sun for the most part plus i try to reapply within 2 hours but worth a try if you need big quantities or cant get hold of your usual one.

suemh2 profile image
suemh2

Hi. Think it depends on your GP. I've had Sunsense F50 prescribed once but not on repeat. Our surgery has cut back on what they will prescribe.it is always worth asking for. x

maalidog profile image
maalidog

Hi, I,ve had sle and discoid lupus for 30+ years and from day one have been prescribed free sunscreen on a monthly basis all year round and will continue to do so for life. Talk to your consultants, it should automatically be given to you. Xxx

Frosty1960 profile image
Frosty1960

Hi, I get my sunscreen prescribed i get sun sence 50+ as like yourself can't do without it i get so many problems in sunlight/daylight as doesn't need to be sunny, even with that still gets me summertime is mainly a case of staying indoors. I do live in Scotland might be different in England and Wales.

Wendy39 profile image
Wendy39

Hello

Yes, I have it prescribed.

I am photo sensitive and the Dermy I saw at diagnosis recommended my GP prescribe it. It’s the medical grade one - Ego Sun Sense SPF 50+. It was added to my repeat and had been there ever since. However I cover with clothing now and so only need it for hands and feet. I use a different SPF50+ for my face that is tinted, as regular sun cream makes me ghostly and very shiny!

You can purchase the Ego Sun Sense from Amazon too though.

Best wishes

Wendy

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