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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ButterflyEffect96
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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
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
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
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!
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.
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.
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.
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.
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.
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-...
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
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.
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
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
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.
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.
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)...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
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