I have been prescribed the above for several years for lupus , if I don’t use it or reapply I get the dreaded hot face butterfly rash , and in turn feel quite unwell . Etc etc …..
sun sense has been unavailable for a while now , and uvistat . I’ve been prescribed la Roc posey by my doctor , has this product is the only other that can be prescribed . Boots are now telling me sun protection cream is black listed and will not prescribe .
I know what lupus uk say about entitlement and lupus is classed within the few conditions sun factor can be prescribed .
I’m on low income , and will struggle to finance my need to use factor 50 several times a day , I am sensitive to indoor lighting as well .
Does anyone else struggle to get factor 50 on prescription . I have also been spoken to by chemist assistants , and pharmacists in disrespectful ways .
Like what do I need factor 50 for in winter , or indeed why do I need it at all . Even had the snubs and sniggering while picking up my prescription ..
Now I’m told they cannot prescribe it ???
Really wish there where more awareness about this LUPUS
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Willow1414
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Hi Willow1414,I’m so sorry to hear that. I don’t have SLE but have DLE, which is Lupus only on the skin. I use Boots Soltan Spf 50+ which is meant for kids. Its about 3 pounds and works fine for me. I understand your skin is way more sensitive than mine, maybe you can try a patch test.
Sorry to hear of your experience and saddened by the attitudes you’ve encountered at the pharmacy. Our condition isn’t well understood at all. I have sunsense on repeat prescription but don’t get on with it well. I’ve started buying Boots Soltan instead when it’s on offer. My GP surgery hasn’t given me any alternative to sunsense but hasn’t said they will no longer prescribe
That must be really miserable for you. How do you get on going out during the day? Or for holidays (a bit of a dirty word at the moment, I know)? I'm having problems with UV sensitivity and have only realised to what extent this year (I was only diagnosed with lupus last year and put everything down to waiting for the meds to work). I'm getting fed up with constantly applying sun screen and ruining my clothes but the biggest thing is not being able to go out during the day, it's killing me. I am trying to get my rheumy (or dermatology, who he's passed the buck to) to prescribe mepacrine to see if that helps. Have you tried that?
It can be miserable, and I'm sure I'm considered as the crazy lady in the street that keeps her curtains closed 24/7!
Oh holidays, lol I can just about remember them! I have a silly hat and we are careful when and where we go.
I'm fairly good at being sensible but I still have a rashes for most of the year, even now with no sun insight. I also fine if it's a very sunny day I get my energy zapped even if I don't go outside.
Lol luckily we don't get that many sunny days!!
No, I haven't tried mepacrine, will have to look it up. Though I'm determined to reduce all the meds I'm on. Lupus makes you sun sensitive and then the lupus meds make that even worse.
It's a life lived in fear.
I hope you fine something that works, please let me know if you do
I've not had sunscreen prescribed for me, but I'm in the relatively early days of trying to find out what affects what. I've tried a few sunscreens which would have been absolutely fine before lupus but aren't now and I've plumped for Ambre Solaire Kids Sensitive Advanced 50+ because it was recommended as one of the best by Which and has very high protection for UVB, UVA and long UVA with 5 stars. I get it from Asda at 2 for £12 but having seen all the recommendations above for the cheaper Boots Soltan I might give that a go. I'm also trying to get mepacrine prescribed to see if that helps as there have been a few people here who have said it changed their lives, and I could do with some of that! I really hope you find a solution as I know it's no fun, and expensive to boot! Take care.
Hi willow, it is Crosby chemists i use in Edinburgh but never had any bother getting it, tried uvistat as smell off sunsence started to irritate me but its bit greasy ended up buying la roche posay from boots as was offer on its best one i have used pity its not available now on prescription.
La Roche is available on prescription, as is sun sense and uvistat , it’s the practice doctors and chemists who are not willing to prescribe or give you on prescription . It is listed as the only 3 that can be prescribed .
Hi Willow. I can get Sunsense on prescription but I told the doctor I didn’t want it any more as it’s so sticky and greasy and it stains everything you wear. I now buy Avon Care factor 50 face and body sunscreen, Nivea, Boots Soltan or Child’s Farm. Whichever has an offer on. As someone has already said Home Bargains are great at this time of year for end of line offers. Or try the bigger supermarkets. You can also buy Altruist online - it’s very good and, as the name suggests, affordable. It’s about £4 for 100mls. It was developed for much sunnier climes than the UK where the people may not be able to afford expensive lotions.However I do take exception to Boots telling you you can’t have what your doctor has prescribed! Surely this is not their decision?
Good luck with your search. It really is trial and error until you find something that suits you.
Hi Willow. I’m in the US so I’m perplexed with a problem like buying sunscreen whereWe have whole store aisles full of it. I’ve read that any protection over 30 or 40 spf is overkill. I’m very sensitive to light. Even a computer screen gives me a rash. And I wear dark glasses most everywhere. Hats and carry umbrella. A few sunscreen shirts
Are helpful but pricey. Some very nice sun powders for instance colorscience is pricey but very effective and good for re application a lot during the day. Best, Titters
HiI get Sunsense on prescription and gave experienced the supply problem. What I found out is there are some of the bigger bottles with pump action top around in some areas which Boots chemist found for me so it might be worth asking if it’s only the size on your prescription unavailable. Ask if they can get any size of bottles and if they can get your GP to change bottles size on your prescription. Can’t be without it either xx
I have had Uvistat spf 30 prescribed for 30 years and still find it pretty good as I react to other sunscreens and was patch tested for this one.. I spoke to the pharmacist for advice about upgrading to a higher factor when it became available and he said there wasn't much difference and 30 worked well as a block. When I changed GPs, they said they didn't prescribe sunscreens but quickly changed their tune when they saw the blisters! Your consultant should be able to give your GP a nudge.
Sorry you are having issues with this. My repeat prescription has in brackets (eligible due to cutaneous lupus). Check if that is written next to yours. I personally do not use this though due to costs. I pay my prescriptions and the bottle I get is so small. I find boot number 7 factor 50 moisturizer the best for my face. Use asda own fact 50 for my body. I get the boots one when it is 3 for 2 or I ask for it for birthday/Xmas presents. Maybe you need to change pharmacy. Lots do not understand our conditions but you would expect your pharmacist too.
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