Spf cream 50 or 50+ : Hello, I have been diagnosed... - LUPUS UK

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Spf cream 50 or 50+

LittleGamer profile image
21 Replies

Hello, I have been diagnosed with lupus last year after summer. This will be my first summer since I have been diagnosed and I was already getting a sun rash when there was barely any sun out there recently. I was prescribed spf cream by my doctor and they don’t have it in the pharmacy so I asked for an alternative and (not my doctor) replied and said that they basically can’t do repeat prescription on that… is that true? We have to buy our own and they can’t prescribe it? I thought that if you want 50+ the doctor has to prescribe it for you. Please let me know what you do and if my gp is taking the p word :) Alicja

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LittleGamer profile image
LittleGamer
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21 Replies
Naladog profile image
Naladog

Hi LittleGamer , I am currently in the same battle than you.My dermatologist and vasculitis consultant sent a letter to my GP for suncream SPF50 prescription but still waiting.

I sent yesterday a second message to my GP practice but not answer yet.

I will let you know the outcome.

Best wishes 💜🦋💚

Djlr profile image
Djlr

Lupus brings NEW CHALLENGES to all of us - and the SUN ☀️ in any FORM is not our Friend. 😎😒☀️(Don’t forget about WINTER - IE: SKI SLOPES & SNOW REFLECT Sun 🥴 - SUN is out ALL YEAR, wherever we are .....)

Staying away from the SUN is the BEST ADVICE- but, when we do have to go outside - wearing a GOOD “BROAD-SPECTRUM” (UVB & UVA PROTECTION) SPF 70+ will help.

lupus.net/symptoms/photosen...

I wish my DR had told me about the SUN ISSUES “20 years ago” & I hope that “I would have listened”, since it affects 50-80% of Lupus Patients.

lupusencyclopedia.com/wp-co...

Many Lupus people get RASHES from the Sun, but it can go much DEEPER than Rashes & cause INTERNAL Organ Damage, even after one afternoon working in the YARD.

They are many stories of Lupus Friends saying: “I use to be a Life Guard”, “I lived on the BEACH growing up”, “I was always able to go play Soccer/Football all afternoon & the Sun never bothered me🤔”, .......

But, then I heard Stories (including mine) after an afternoon at beach (with PLENTY OF SUNSCREEN) I had a HORRIBLE MIGRAINE, CHEST PAIN, Joint Pain, EXTREME FATIGUE- the SUN had finally attacked my whole body in a Lupus Flare.

I met a lady in Hawaii & I asked her “WHY” was she Wearing a large floppy hat, long pants, long sleeves & everyone else was getting ready to go out on a boat to go “snorkeling, including me- after I had just been diagnosed with “lupus 😳; she said “I had a 17 year LUPUS flare from the SUN”.

At The time, I thought that my body was (w/Sunscreen) still able to handle the sun. But, it was “slowly making my lupus worse” and I didn’t realize the SUN was the reason my BODY symptoms were worse or connected to being in the SUN - until a year or two later.

Lupus patients wear “sunscreen all year long” -

Just walking to the car w/the sun hitting you in a parking lot can be too much and cause Lupus symptoms.

Even some lupus patients find that the sun going “through their clothes” is an extreme problem or “through the car windows when you’re driving” - a major problem. GLASS intensifies the SUN, like SAND, WATER, etc w/reflecting the RAYS.

- USE of a SUN UMBRELLA w/Sun SPF PROTECTION

- SUN - SPF CLOTHING

- RITZ “SUN GUARD” put in CLOTHES WASH gives Clothes SPF 30 For about 30 Washes.

- Hats & Sunglasses 😎 to protect eyes.

We learn our New Normal Living w/Lupus. Protecting OURSELVES from any ENVIRONMENTAL Lupus Triggers Help save us from a Possible Bad Lupus Flare-

Be PROACTIVE 💜 OUR Skin stays MUCH “YOUNGER LOOKING” 🤗 so there are advantages 😊

We do this by “Listening to our BODIES” to get the most out of our Good Days as we share w/Family & Friends.

health.com/condition/lupus/...

LittleGamer profile image
LittleGamer in reply to Djlr

Thank you very much for your reply and the information! I am quite aware of the effects it has on us :(

MrsMarigold profile image
MrsMarigold

Hi LittleGamer. Cute name. Sorry though at such a young age you are in the lupus club. I can not use sunscreen as it irritates my entire body of skin. I should specify cream

I can not use. I can use several different brands of sunscreen makeup that brushes on. Some brands are 50 SPF. The most helpful thing for me is clothing with sun protection and hats and even gloves depending where I am going/doing. I’m curious why the sun cream in UK is prescription? Here in US it is free to buy

Just about anywhere. Best wishes, MrsMarigold

LittleGamer profile image
LittleGamer in reply to MrsMarigold

thank you 😅 you can buy it but you can have it prescribed and not have to pay for it it can be quite expensive all year round separate for body and face. Also not sure if you wants higher than 50 they have to prescribe it 🤔

MrsMarigold profile image
MrsMarigold in reply to LittleGamer

Ok. That makes sense. It is a very expensive product. Mostly for me anyway because I live in a very hot and humid place 6 months out of the year/I don’t go out in daytime. Sometimes I have to. The problem is I want to have that freedom back. 😬

Turquoise-1 profile image
Turquoise-1

Hi LittleGarner,

I wear SPF and a hat all year round as I am extremely sensitive to the sun, keep covered & walk in shady woods or early morning in warmer months.

The sunshine is my enemy!

GP refuses to prescribe SPF saying the Primary Care Trust for the area I live in does not fund it.

I don’t get free prescriptions so have an annual prepayment certificate which would save me ££s if I could get SPF on prescription. I have no choice but to buy my own.

My husband is Coeliac and cannot get any gluten free foods on prescription as only Coeliac children in our area qualify. Apparently some parts of the country prescribe GF foods for adults. Maybe it’s the same for SPF? ☀️

LittleGamer profile image
LittleGamer in reply to Turquoise-1

Yes I think I will have to do that too :( oh that’s so stupid and unfair! I got it prescribed now but not sure if that one will be available either 😅 I hope that changes for you and best of luck xox

Poshcards profile image
Poshcards

I have had Lupus for over 30 years and always had to buy my own 50 plus sun screen x

Barbara17 profile image
Barbara17

Hello. I can get sunscreen on prescription but it is horrible, thick, greasy stuff which stains my clothing so I prefer to buy my own. Avon F50 face and body is good as are Child’s Farm products or Nivea. Really it’s trial and error finding what suits you but those I’ve mentioned are quite reasonably priced and often on offer. Especially during the winter!

LittleGamer profile image
LittleGamer in reply to Barbara17

okay thank you very much 😎

KnitSewPurl profile image
KnitSewPurl

Hi Alicja, I buy my SPF50+ and I get them from the best manufacturer and it works I do not rely on prescription unfortunately it is one of those that I do not get on prescription. It is something that you need to investigate and find which one is best for you and your skin. As for me I have used 2 different types of SPF 50+ one of them is LaRoche Posay ( they have 2 version tube and liquid bottle version)and the other is Loreal (comes is a small liquid bottle)

La Roche Posay both version are very good but very expensive and they come in very small quantities but you dont need a lot on your skin and they go a lot further.

Loreal liquid bottle the very small bottle appear to be very similar to LaRoche Posay liquid bottle some how. Both are very different companies so I am not sure who is stealing who's recipes 😒🤔anyway they both work really well.

I myself dont find any problem with any of them .compared to other local produced SPF 50 creams.

LittleGamer profile image
LittleGamer in reply to KnitSewPurl

thank you very much 🥰

KnitSewPurl profile image
KnitSewPurl

Btw both LaRoche and Loreal are non greasy and they are brilliant on the face.it is a real bonus.

Vikki66 profile image
Vikki66

Hi LittleGamer, my daughter was getting it prescribed when she was at uni in Warwick despite not having a proper diagnosis. She had Sunsense and Uvistat, but they are both quite thick and white which she didn’t particularly like. Since being back in London, she’s been buying it herself - La Roche Posay - which as others have said is very expensive. I saw online that a neighbouring CCG (East & North Hertfordshire) prescribed La Roche Posay so I approached ours and found out that they’d stopped prescribing it several months before. Try and look up prescribing guidelines for your CCG, I’m pretty sure that in theory people with Lupus are entitled to sun creams on prescription although many GPs try to get out of prescribing anything nowadays that can be bought over the counter. That, however, shouldn’t apply to people with chronic conditions. This is the wording online for East & North Herts CCG:

Sunscreen should be prescribed in line with Advisory Committee on Borderline Substances (ACBS) approved indications. Sunscreens marked as ACBS in the British National Formulary are regarded as drugs when prescribed for skin protection against UV radiation in abnormal cutaneous photosensitivity resulting from genetic disorders or photodermatoses, including vitiligo and those resulting from radiotherapy; chronic or recurrent herpes simplex labialis1. Prescribing for other indications is not permitted on FP10.

It also states that that the following products are the only ones that can be prescribed as they are the only ones that meet ACBS criteria:

Anthelios XL Cream Spf 50+ (this is La Roche Posay)

Sunsense Ultra Lotion Spf 50+

Uvistat Sun Cream Spf 30

Uvistat Sun Cream Spf 50

Uvistat Lipscreen Spf 50

Good luck in getting your GP to reconsider - if your consultant writes a letter, they’re less likely to have grounds for refusal. People with health conditions on low incomes shouldn’t be penalised like this.

LittleGamer profile image
LittleGamer in reply to Vikki66

thank you very much that’s very helpful 🥰

fabwheelie profile image
fabwheelie

Sunscreen should definitely be available on prescription if you have Lupus. Once on prescription they should be able to put it on repeat, where you then only a need to have a limited number of prescription reviews to keep getting your repeat prescription items ( that's often every 6 months or yearly a general review)

There are only limited ones / certain brands of sunscreen available on prescription. You may need to have to ask your consultant or any specialist nurse to write to GP to confirm the "medical need" as sunscreen is not available on prescription to most people/ "normal healthy", only prescription available to those with certain medical needs

This link from NHS about Lupus might help too, as it clearly states that Lupus patients can get it on prescription. Some GPs / CCG areas are getting very strict about this and prescribing sunscreen, but often if first refuse and you show them this link they will then agree

nhs.uk/conditions/lupus/

Chanpreet_Walia I'm wondering if LUPUS UK can do an article about Sunscreen and that it can be available on prescription, the ones available etc. I'm sure it's even in Rheumatology guidances about adult lupus treatment and how beneficial sunscreen is, but I'm hearing more and more about Lupus patients getting refusals to have sunscreen on prescription ... There should not be a "postcode lottery on this"

LittleGamer profile image
LittleGamer in reply to fabwheelie

okay thank you very much, yeah that’s not fair at all I don’t understand why it’s done like that 😕 the ones my gp prescribed me are both out of stock atm :(

Naladog profile image
Naladog

Hi LittleGamer as promised I share my advance on this matter.

Requesting suncream prescription to my GP
Naladog profile image
Naladog in reply to Naladog

GP surgery response

Go answer in relation to suncream prescription
LittleGamer profile image
LittleGamer in reply to Naladog

that’s so unfortunate! I guess it’s not funded in your area but that’s ridiculous like someone said is a postcode lottery 💀 I got my prescription but they’re not in the pharmacy and the pharmacy doesn’t know how long they will be out of stock even alternatives… the whole system is silly. Thank you for getting back to me xox

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