Newbie-lupus queries: Hello! I am newly diagnosed... - LUPUS UK

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Newbie-lupus queries

Whatafaff21 profile image
51 Replies

Hello! I am newly diagnosed with SLE. I have a terrible rash on my face right now from taking the anti malarial medication. I wondered what spf cream brands people use as well as moisturiser as both of mine seem to be reacting to my skin!

How do you keep covered up in the sunshine? Do you wear spf clothing and if so where from? It seems so expensive! I have to walk two children to and from school so I can’t escape being out in the sun.

Thanks in advance 😊

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Whatafaff21 profile image
Whatafaff21
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51 Replies
CSLO profile image
CSLO

Hi there.

Your name says it all really: what a faff!! It really is!

I'm very reactive to the sun and have to take super precautions. I cover up all the time with sun protection clothing which I source from Australia and or tightly woven garments that don't allow the sun through; gauzy fabrics are a thing of the past for me.

Always wear a hat. I bought a couple of these from Solbari. They are expensive but I've had them for years and years. They fold up into my handbag which allows me to always have them with me. They wash well in the washing machine and you can fold the brim up or down as you prefer.

solbari.co.uk/collections/u...

Solbari also do a comfortable long sleeve t shirt that is factor 50. They are comfortable and practical when out walking though they are not going to win any design awards.

solbari.co.uk/collections/s...

I use a Clinique 50 facial sunscreen which is also perfect under makeup. I love it, my skin is very sensitive and it doesn't make me react in any way. It's light and non oily and a perfect base for makeup. I wear it every day throughout the year. One tube lasts endlessly so though the initial outlay may be expensive, it just lasts and lasts.

clinique.co.uk/product/1667...

I've found the French brands of suncream that are only sold in chemists/pharmacies are good for sensitive, reactive skins. Look for Avene or if you can source it Mustela. They are expensive but I have very little flesh exposed so they last a long while.

It's all such a giant bore but it is what it is; I recognise the necessity of being careful. When the going gets really tough, and our summers regularly have heatwave periods now, I even use a sun parasol if I need to go out walking. Solbari do a brilliant one.

Set yourself up with the necessities that will allow you to live as healthily and happily as poss. The constant struggle to find ways to live normally in Summer or when travelling can really pull you down. The 'Come for drinks in the garden' invites are always tricky. I'm honest now, explain that I need some shade and then don my 'kit' and try to live my life.

All good wishes to you.

Whatafaff21 profile image
Whatafaff21 in reply to CSLO

Thank you CSLO that has been tremendously reassuring and helpful. It is a faff- and I’m just going to adapt and get on and will take all of this advice and use it! I’ve already looked at parasols from Japan with spf- why not! They’re good for space invaders also. I was pondering the hats but hadn’t clicked they are washable. That is good news as everything all seems so expensive.

And I’m just about getting beyond people saying how fabulous the sunshine is right now. I will check out the French brands. For makeup to cover my face that is red and puffy I’ve been looking at rosalique but when I tried it - although great at coverage it left my skin feeling very tight and flaky and slightly grey.

Thanks again 😊

CSLO profile image
CSLO in reply to Whatafaff21

I use Clinique DDM lotion on my face (moisturiser) and an Avene gentle eye cream around my eyes. My super reactive skin doesn't react to them. Obviously the initial outlay can be costly for these things but so little facial skincare product is used that they last for ages.

I also use a Clinique foundation, clinique.co.uk/product/1599...

It's light and gentle, I've never reacted to it. If your skin is red then go for a beige tone as it counteracts the redness. I'm a real pale face so my colour is alabaster which would probs be too pale for most people.

My skin cries out in protest to so much. I've worked my way through so many brands with trial and error; it can be a costly exercise. My sensitivity around my eyes has probably been the trickiest thing to manage. My Avene gentle eye cream was a gift from the God's!!

Whatafaff21 profile image
Whatafaff21 in reply to CSLO

Thankyou. I have super reactive skin also and get horrendously sore and puffy eyes with the wrong makeup or remover. I’ll try these. Especially the Avene gentle eye cream!

Tiggywoos profile image
Tiggywoos in reply to Whatafaff21

Just a quickie … IT CC cream is a god send . It’s super moisturising and is lovely coverage . You can buy trial sizes on lookfantastic so you can try it before you commit to big size . It’s the only foundation that doesn’t irritate me . Roche posay factor 50 (non tinted version) is awesome and you don’t really have to put cream on underneath . For horrible angry flares I used epederm ointment . Sorry I’ve gone on a bit I did say quickie 🤣😘

Whatafaff21 profile image
Whatafaff21 in reply to Tiggywoos

Oooh thank you! I will check out lookfantastic! I have spent a fortune over the years on makeup and creams I have to discard. It is SO good to hear the advice of people who know!

Tiggywoos profile image
Tiggywoos in reply to Whatafaff21

I go for the light colour even though I’m not that fair . I often am I bit yellowish and it covers that . If you are pale skinned I would go for “fair” which is lighter than “light” if that makes any sense !

La Roche posay toleriane cleanser is lovely . All these products were recommended by a lovely dermatologist who sadly moved to the states . xxx

Whatafaff21 profile image
Whatafaff21 in reply to Tiggywoos

I’ve just ordered the CC cream in fair as am also a bit yellowish or pale or red. Looking forward to trying this. Along with the Avene eye cream that CSLO suggested. What do you wash your hair with? I find I am now reacting to my shampoo since taking the anti malarials bizarrely! If you don’t mind sharing and CSLO also? Thank you both 😊

Tiggywoos profile image
Tiggywoos in reply to Whatafaff21

ah you’re welcome ☺️. Hair wise I’ve found redken shampoo for fragile hair the best and I use bond pro conditioner also redken . Redken expensive but you don’t need much so it lasts for ages. Other cheaper brands made me scalp itchy and sore . I like GHD heat protector spray before I dry it as my hair breaks a lot at the front and I think this helps . I was on hydroxy for 6 months before my hair stopped falling out so still slightly paranoid about hair 😳x

Tiggywoos profile image
Tiggywoos in reply to Whatafaff21

boots the chemist sometimes sell anthelios 400 factor 50 la Roche posay on 3 for 2 . I think you can get something similar on prescription but I found it too light in texture . This is creamy and saves using a day cream x

Hollo68 profile image
Hollo68 in reply to Whatafaff21

I have just found at the end of last year that dermatologists have made their own sunscreen in uk and it is really good and reasonably price it is called Altruist isnt heavy and not sticky

michaellasmith profile image
michaellasmithAdministrator

Hi there Whatafaff21,

Welcome to the LUPUS UK community forum, I hope you have found it useful so far!

I have attached some useful links below, regarding sun exposure, light sensitivity in lupus and travelling tips.

lupusuk.org.uk/eclipse/

lupusuk.org.uk/travelling-w...

lupusuk.org.uk/everybody-lo...

lupusuk.org.uk/wp-content/u...

For more information you can download or order our free information pack -

lupusuk.org.uk/request-info...

You can also call our national office for a chat or for support on 01708 731251, we are open from 9am until 5pm, Monday to Friday.

Warm regards,

Michaella

Tiggywoos profile image
Tiggywoos

don’t forget to use sun cream before going to hospital / dentist hair appointments etc as the lights may trigger off rash xx

FredaN profile image
FredaN in reply to Tiggywoos

Yikes! At my last dentist appointment in December, I felt a bit weird/unwell afterwards, so popped to the loo to compose myself before leaving. When I looked in the mirror I had a very defined red rash across my nose and cheeks (I don't think I've had something that resembled the malar rash that much before). People were staring at me because I am extremely pale so the contrast was very noticeable. I always wear SPF50 if I go out anywhere, but now wondering if their lights somehow still triggered something. It had settled by the next day and not sure how long a malar rash typically lasts.

Tiggywoos profile image
Tiggywoos in reply to FredaN

Definitely lights can produce rash and I bet the dentists are bright .. I was in car today for 2 hours and it was bright sunshine . Even with factor 50 on rash came up .. did go down though .. supermarkets can be bad too

FredaN profile image
FredaN in reply to Tiggywoos

The light was definitely bright, as I remember they blinded me with it at one point and I felt quite disorientated! I wish I'd taken a photo of the rash now, to show the rheumatologist at my next appointment.

For about a decade I've not been able to spend very long in cars without feeling ill. It's not travel sickness, but it's definitely the same thing that's happens when I'm in the sun longer than about 15 minutes and sometimes just randomly for no apparent reason. When I've tried to go longer than about an hour in a car, even with a break, I just feel dreadful. Last time I attempted to visit my in-laws, which is 2-3 hours away, I ended up sobbing in a service station. It does mean I haven't seen most of my in-laws for the past 8 years because only my mother-in-law comes to visit us and I don't think anyone understands. Whenever I've tried to explain it people tell me to try ginger sweets or those travel sickness wristbands 🫤 I'll probably have to try again very soon, due to my mother-in-law being ill at the moment, but dread to think what will happen.

FredaN profile image
FredaN

I'm diagnosed with Undifferentiated Connective Tissue Disease, but I do get rashes from the sun and it makes me feel very unwell if I'm out in it too long (doesn't take long these days!) I also react to a lot of skin care and reached the point where I got all the ingredients of things I'd tried, then cross referenced them to work out potential triggers. I know sodium lauryl sulfate and shea butter/butyrospermum parkii (linked to latex allergy) are a problem for me, but I also suspect some silicones, linolool, niacinamide and perfumes.

I use La Roche-Posay Anthelios UVMUNE 400 Invisible Fluid SPF50+, but also top up with their Anthelios invisible anti-shine face mist every couple of hours (especially if it's summer). It also works well over make-up. The mist does have dimethicone in it, which I have wondered might be an irritant for me, but I seem to be ok with this so who knows?! The liquid does come in a tinted version, but I haven't tried it.

For general skincare I mostly use a brand called Bondi Sands, which is available in Boots and quite often on offer. I'd recommend the Daydream whipped moisturiser the most, as it's fairly light, but their Sweet Dreams night moisturiser isn't heavy enough to cause issues for me either. Their Fresh'n Up gel cleanser is also good. I've found bits & bobs within the French brands to be good, but I think it can be quite a personal thing, depending on what ingredients we react to.

Whatafaff21 profile image
Whatafaff21 in reply to FredaN

Thanks very much- that a good idea to cross reference ingredients as am sure I am now allergic to a few things. Binbags make it hard to breath and bring me out in a rash! Dishwasher items also. Am so reactive and driving in a car for more than 15 mins brings me out in a rash. My scalp now also since in the tablets. I can see from this forum that it will be a long and changeable journey and it’s good to be on it with you all! 😊

FredaN profile image
FredaN in reply to Whatafaff21

It's awful when you react to everyday items that most people have no problem with. Sometimes I've sensed people think I'm being deliberately awkward, being sensitive to things, but it's really us who find it the most difficult! I seem to react to gluten and doctors don't think I have coeliac disease, so I have had the comments "oh, my friend X has real gluten intolerance" - emphasis on the "real". I wish my symptoms were imaginary!

I also have had psoriasis since being a teenager, so I have to be careful with my scalp. A few years ago I started reacting to the shampoo I'd used for years and after trying a few others I worked out it was likely the sodium lauryl sulfate. I now use Umberto Giannini Scalp Restore shampoo & conditioner and find that works for me. That brand tend to be fairly clear what their products are free from across their whole range. I think a fair amount of people must react to things like sulfates, silicones and parabens as I've noticed an increase in products/labelling for those, so it could be worth experimenting a bit with that type of thing. I worked out SLS in toothpaste was causing burning pain in my mouth too.

I notice someone recommended an Avene eye cream, which I also found didn't irritate my eyes. It's a bit pricier, but I've tried a couple by a brand called Nuxe that were really nice (Merveillance LIFT I've had a few times). I wish we could get tiny samples of all these things, so we don't waste so much money/products! You'll find you're never alone here and everyone's happy to help - I've never come across so many people I've said "me too!" to.

3doglady profile image
3doglady

I understand it is hard to stay out of the sun, so I wear loose cotton clothing which really help, not just with the heat helps but to stay cool. I always wear a sun hat because you'll be more prone to heat stroke. I have not found any creams that work but antihistamine do seem to help with any itching especially at night. My rash is both sides of my face and down my neck and it is really annoying. I tried a heat mask with my daughter, having a girly night and to my utter surprise the rash went down. I hope this helps. X

Whatafaff21 profile image
Whatafaff21 in reply to 3doglady

Ahhh- Thankyou! I also have rash on both sides of my face and on my neck and chest sometimes- always my neck. Before being diagnosed I found that if I had plant milk instead of milk in my very much needed coffees in the morning that it helped. And I’d put anti itch cream on which just seemed to glide off.. antihistamines help - a couple of years ago the dr said I had shingles ( oh how I laugh now!!) and prescribed fexofenadine which helped a bit. But. Itching has ever worked with the early spring rashes I’ve had. Am interested to see if the lupus drugs will! That is interesting with your heat pack!! X

dg70 profile image
dg70

I use a parasol a lot as I don't like a sweaty head when it's hot. La roche posay sun cream is factor 50 and good for sensitive skin. It leaves no white marks. They do a spray on one too which is great for topping up especially if you have make up on. I wear a lot of linen in the summer as it covers well and breathes as I find nylons and man made fibres make me sweat and this causes rashes or makes them worse. See your gp about rash creams as there are many different steroid and non steroid ones which help keep rashes under control. If one cream doesn't work go back and get a stronger one. Some rashes don't bother me so much so I leave them be. I use e45 as a body and face moisturiser twice a day. Its a trial and error thing to see what works for you. We are all so different with reactions to things.

Whatafaff21 profile image
Whatafaff21 in reply to dg70

Thank you! I hadn’t thought to ask the dr for a cream for the rash. I am so daft at times. I’ll give them a call today. I am getting itchy sores base of scalp which winter hats are exacerbating - I hate a sweaty head, too! Might start a trend in winter parasols!

dg70 profile image
dg70 in reply to Whatafaff21

If you have a good gp they can really help with many things. Bigger issues you can usually ring your rheumatology helpline. I think even chemists can help with rashes too. I'm on lower steroid cream for some rashes and the highest steroid cream for nasty ones. You can also ask for a dermatology referral for more long term skin management but in the interim the GP is the best bet for instant help. I'm still waiting to see dermatology eight months later so I'm glad the GP has given me relief by prescribing creams that have really worked. I have a uv parasol in the car so its there whenever I go out and one or two in the house. Amazon have loads of uv parasols for reasonable prices and they look pretty nice.

Whatafaff21 profile image
Whatafaff21 in reply to dg70

Ooh! Chemist! I will pop there now as my face is now raging! Top tip. Thank you 🤩

flo_IarFachYrHaf profile image
flo_IarFachYrHaf in reply to Whatafaff21

definitely get an umbrella! I've written another longer reply...

and yes trial and error is often the only way. Before I found weleda white mallow cream I had always fallen back on e45, then it started irritating me. I saw a GP who comes from a eczema asthma etc family and she prescribed Epaderm, which I can use, and still have as back up to the Weleda and when everything is getting sore and cracking, but gloves (see my other post) have helped hands

Tiggywoos profile image
Tiggywoos in reply to flo_IarFachYrHaf

I love epaderm !!! It’s even fine on my rashy eye lids , slather over mouth too ! Weirdly can only tolerate ointment not cream x

CavendishCool profile image
CavendishCool

Ditto Solbari. I buy their pieces when they're on special. Last year I bought two long sleeve swing t shirts for £55. A hat which I know I have to wear, but I really don't "love" because it makes my head hot and I "splashed" (pardon the pun) on the floral swimming leggings because my legs were suffering. I wear them as every day leggings, not for swimmimg - daren't go in a pool for fear of how I might react with chlorine. I used to love a swim. I got those with 20% off and they are really good. On the hottest days everything is really hot, but I wouldn't go out in it anyway. I did buy a couple of pieces from Mountain Warehouse, but they were utterly useless and I knew I was wearing them so were really uncomfortable. I use Ultrasun SPF 50, anti aging on my face, put on instead of moisturiser and the SPF 50 Body. It's a once per day application and then you put Solbari over the top. So far so good. QVC (online) allow you to buy and try so you can send back the Ultrasun within 60 days; they do Easy Pay too. Please don't worry about replying to this; just suggestions. Welcome to the Twilight Zone of Lupus. I liken it to a game of Whack-a-Mole. Sort one thing out, smash it with a hammer and up pops something else. Disclaimer: all the above stuff worked for me quite well last summer, but a mole might pop up this one. Have a good day, lovely Lupus peep and peeps🙏

Whatafaff21 profile image
Whatafaff21 in reply to CavendishCool

Thank you. I am glad for these tips. Especially about the leggings! Does chlorine exacerbate lupus?? I was going to do more swimming. But now thinking about it my skin always feels awful after a dip which is why I prefer the sea and rivers! Thanks for the Solbari ref also. It is so good to share the whack a mole - ing! And to meet people who understand.

CavendishCool profile image
CavendishCool in reply to Whatafaff21

I'm not sure. I haven't been swimming since my diagnosis - 3 years for various reasons - unnecessary exposure to Covid (had that twice in 9 months) is the primary one. I would like to try wild swimming, but worry about the unnecessary exposure to - who knows what. I practice and teach yoga, so that's my go to. Lupus is totally bewildering in my opinion. Today is a reasonable day physically, but awful at the moment mentally, although I have suffered depression and anxiety for over 50 years, losing my best friend just before Christmas has brought that back to the fore. The GP has taken me off meds for that, so I'm back to the what feels like a constant battle. Teaching yoga is my weapon - other people rely on me to turn up for them. Of course, there are and always will be so many people worse off than me, but when you're in the eye of your personal storm, I find it hard to feel lucky, grateful, blessed etc. You just have to roll with the punches. Oh no! drowning in unncessary cliches now. Have a good day. Off to bend some lovely elderly ladies about (chair yoga) 🙏

Whatafaff21 profile image
Whatafaff21 in reply to CavendishCool

I am so sorry to hear about your friend. That must feel very painful and raw. I am glad to hear you teach yoga and find that helps. You sound a very nurturing person so I hope that you nurture yourself whilst you walk in the path of grief. Personal storms are hard. But they do pass. Thank you for reaching out.

KayHimm profile image
KayHimm in reply to Whatafaff21

Hi Whatafaff21 -

Swimming is very difficult because the rays bounce off the water and the sunscreen can wash off a bit. I have waited until after 4:00 pm to swim. Good news, though! There are masks and face covers that block the sun. Yes, you will feel uncomfortable at first. But I have found people really do understand. I am really excited to have found a mask on Amazon that feels more normal looking, especially since people wear masks now anyway.

You still wear sunscreen but my doctors say there is nothing like a total barrier to block sun.

Good for you for reaching out and getting advice. It is an adjustment but there are a lot of good products on the market nowadays. I agree that Solbari is fantastic. I use the hats with veils from Solbari and Coolibar. These will allow you to be safer in the sun.

Best of luck.

K

Whatafaff21 profile image
Whatafaff21 in reply to KayHimm

Will Google Coolibar- thank you! It feels a lot to give up with swimming. It is good to hear you are the same

LuluM25 profile image
LuluM25

Hi Whatafaff21, I've had SLE for around 35 years and most of the time my skin reacts minimally every so often.

However, in 2018 I had a rash caused by sun on my face, neck and upper torso like no other!! 😲 My message therefore is to ask for a referral to a dermatologist and if you think your skin is getting out of control seek help straightaway.

I am now watchful and continuously take a low dose of Prednisolone which I increase if I see new red patches on my skin. You have so much good advice already so I wish you well.

Whatafaff21 profile image
Whatafaff21 in reply to LuluM25

This is safe advice, I’m going to call the dr for a referral to a dermatologist as my face is red raw and as Spring nears I dread the neck and chest rash. It’s so debilitating and uncomfortable. I think we just tend to carry on and out up with things. My hospital trip in December was a huge wake up call. It taught me not to put up and to friendly persist in engaging Drs with concerns.

Richsuz profile image
Richsuz

I have always had very sensitive skin , but recently found Dr Jart+ Cicarepair which is very good. It calms my skin and heaps to camouflage redness 😊

flo_IarFachYrHaf profile image
flo_IarFachYrHaf

Sorry to hear of the skin problems - when I can't use anything else I use Weleda Baby Derma White Mallow Facial Cream. The mallow range also has a good body lotion. As I realised that I was light as well as UV I no longer bother with sun protection cream - most of them upset my skin anyway.

And yes protection from light is a faff...(and can be expensive esp if not working). I hope you find ways that work for you - this is what I wear:

The best umbrella if you are in a windy area is Umbrella Heaven's pagoda uv protection umbrella. Downsides: the handles are brittle, so I have put heavy duty gaffer tape on when new; it is silver underneath, I prefer black underneath. Umbrellas that are big also help protect upper body. umbrellaheaven.com/product/...

I have uv protection walking umbrella as well - hooked handles are useful for when you are in shops etc. I have in the past used small pagoda umbrellas for use in town (not windproof when opening on Swanage pier), but I've stopped now, too much stuff to carry about. Sometimes there are offers on eBay. I now have got the knack of holding up umbrella while using camera or binoculars! Recently I discovered fingerless / half finger gloves for fishing, they have grippy patches so work well when holding smooth umbrella handles solved cracking skin on fingers (my shirts etc all come to just below start of fingers)

Bamboo fibre is a good protection (not sure of the technical reason why) so I buy base layer tops from BAM. Craghopper and other outdoor clothing do trousers, tops, hats - worth looking at eBay - cheaper than solibar and others. I use UV protection Buffs for my face (medium) and can use on head too (large). I look around for when on sale. My parents sourced some UV protection cotton so I have shirts, long dresses and scarves for summer (over face and one on head). You can buy bamboo versions of buffs but also there are a lot of hats made for people with hair-loss or on chemotherapy. The only brimmed hat that works for me is a very big & bonnet like one, which I made myself, great when an umbrella is a big faff - but very limited vision. I do use baseball caps, especially if I need my reading glasses - and buff over chin. Heavy weight twill weave (traditional) denim is a good fabric too. UV swimming leggings are useful under skirts and dresses.

I use Bolle workwear glasses uv and blue light protection, dark ones for when too windy/blustery for umbrella and for swimming.

Swimming clothes long sleeved rash vest and leggings with hooded burkini over top in summer, with buff and dark glasses, neoprene boots & gloves - I look like an alien, but I was not going to give up swimming in the sea.

flo_IarFachYrHaf profile image
flo_IarFachYrHaf in reply to flo_IarFachYrHaf

the Craghopper range uses the name SolarShield. I keep a search on eBay for long sleeved men's solarshield shirts in XXL as over shirts

KayHimm profile image
KayHimm in reply to flo_IarFachYrHaf

Hahaha “look like an alien” .. I was trying to think of how to explain how my new mask may look better than my total head swim cover but didn’t know how to express it. “Alien” is definitely me at the pool. I have taken photos to give friends a laugh.

I like the Solbari swim 👗. That has been a life changer for me.

I think we should all put our photos up here when we get to sunny weather.

Your head to toe photosensitive protection is priceless! You have some determination!!

Kay

flo_IarFachYrHaf profile image
flo_IarFachYrHaf in reply to KayHimm

a young girl was very excited to see an alien on the beach!! When I was wearing my huge hat and dark glasses another young girl at a beach said to her adult "look a celebrity!"

the bus drivers call me a bandit!

KayHimm profile image
KayHimm in reply to flo_IarFachYrHaf

The best!! Humor helps, right?

Check out a new item I just found thanks to this thread: Life Changing Products.com. I ordered the biking cap/ mask. It looks more comfortable than my hats with veil. Cheaper too.

Keep your celebrity spirit!

Whatafaff21 profile image
Whatafaff21 in reply to flo_IarFachYrHaf

Amazing advice !! Thank you. I am going to process this and all other posts and make notes. My brain fog is horrendous right now. Am lucky I have v supportive colleagues but I do struggle for word and remember thing still!! Am on day 3 of the anti malarials Hydroxyquinine? And face rash is the worst it has been but brain fog and joint ache gradually lifting. I’ve just ordered sunglasses but suspect I may need to be looking for something specific!!

flo_IarFachYrHaf profile image
flo_IarFachYrHaf in reply to Whatafaff21

Yes there is a lot of very good advice here.

oh the wonderous brain fog... And nouns - it was not being able to understand simple instructions and seriously struggling with sentence structure when speaking whilst at a 2 day conference that had me going to my GP. It's not so bad now but sometimes my partner calls me Yoda, when a phrase comes out all jumbled up, and my replacement nouns can be funny, I think calling a walnut broccoli makes some kind of visual sense, but I can't do lecturing or gallery education, even reading from a sheet I run out of capacity to talk.

I would say it took 3 months for the hydroxychloroquine to really get going, so the first summer was pretty horrible for me, I was swollen up, pink and lumpy - a toad (I like toads but...) I ended up with a very short course of steroid to calm it down and a giant container of Epaderm for my skin. I find Fexofenodine helps - prescribed by GP - when things start getting a bit carried away

Ah the glasses: Bolle Cobra COBESP ESP & Bolle COBRA COBPSF Safety Spectacles, Smoke Lens

Whatafaff21 profile image
Whatafaff21 in reply to flo_IarFachYrHaf

A pink fleshy toad aptly sums me up right now! And. The. Nouns. I thought it was just me. I actually thought I was going senile! I often now mis name things or my mind just goes blank but I think it is a little better. Do you take hydroxy at night? I have been doing but wondering if during the day may be better? I wake at 4am every morning full of energy….id like it to be 7.

Frosty1960 profile image
Frosty1960

La Roche posay anthelios factor 50+ is best I have tried and I get it on prescription. You can pick up spf protection clothing from likes of mountain warehouse reasonably priced often in sales, and other outdoor clothing places I find useful. You will probably need a steriod cream to clear up any rashes on your face which your doctor or specialist could prescribe.

LalaH52 profile image
LalaH52

Although I have not had the typical lupus malar rash, I've had quite a few issues with rashes at the end of last year on my cheeks, eyelids and neck which have been painful as well as being very unsightly. I've had a skin biopsy which indicated that it is autoimmune. I'm currently tapering down from a high dose of prednisolone and titrating up with MMF to bring it all under control.

I spent a lot of time, trial and error, working out how best to conceal the rashes and lesions during the 4 months BS (Before Steroids) without looking "off" or heavily made up. These are my tips which I hope may be of help:

Moisturiser:

Anything scented was a big no-no, making my skin sting. This applied to cleanser as well. This is what works for me:

BioDerma Sensibio Anti-Redness Moisturiser 40ml. Comes in a small tube, costs around £14 but you can usually find a deal online like 3 for 2 etc. Unscented, just feels very neutral on the skin and moisturises well. Makeup and SPF plays well over it. I still use it daily.

Dermalogica Stabilising Repair Cream 50 ml. It's a bit spendy at £65 and I did get through a whole pump bottle within a month when going through a period where the rash progressively worsened in intensity and spread. It really helped to sooth the skin and calm it down, albeit it only temporarily for a couple of hours. It also helped with healing the horrible lizard-like skin that the lesions caused. Again fragrance-free, feels very neutral on the skin, and a bit more emollient than the BioDerma.

SPF:

Kiehl's Ultra-Light Daily Defence SPF 50 - 60ml - no white cast, doesn't pill with makeup, and doubles up as a morning moisturiser. Fragrance-free. Nice slim tube packaging with a secure flip lid and fits easily in a handbag. Retails around £44.

Natura Bissè C+C Dry Touch Sunscreen Fluid SPF 50 - 30ml - super spendy at £69 for a tube but if you're into luxury skincare this really is excellent. It has skincare ingredients in it such as Vitamin C. No white cast, absorbs well, makeup plays well over it. Again it doubles up as a moisturiser in the morning. It's very emollient. I only use it when my skin is behaving - it has actives in it which don't really jive well with skin that is sore and irritated. There's usually a 20 - 25% off promo offer every few months.

Beauty of Joseon Relief Sun: Rice and Probiotic SPF 50 - 50ml - £16. This is a South Korean sunscreen. It's my favourite - thin texture, fragrance-free, absorbs quickly, no cast, irritation or pilling. Wallet-friendly too. Tube packaging looks and feels like a toothpaste tube so not really suitable for just chucking in your handbag - best kept in a zipped cosmetic pouch if you want to take it out with you to reapply later in the day. It's also not particularly moisturising so I use a moisturiser underneath it.

Concealing the rashes

Less is definitely more. I steer away from any form of CC cream or foundations because for me personally these products draw more attention to the rashes than conceal them. My face just looks "off" , as well as clinging to all the dry scaly and patchy bits on my face.

My advice to first prep your skin with a generous amount of moisturiser/ SPF and let it absorb for 5-10 minutes first. Then apply a few dots of liquid/ cream highlighter or an illuminating primer to the upper cheekbones and cheeks and blend with your fingers. Light reflects off highlighted skin and detracts from the rashes. Lightly dot a tiny amount of good quality green colour corrector over the rash area and gently blend with a dense but soft concealer brush (one with a fairly wide brush area). Then use your concealer and very lightly apply the thinnest amount to the areas you want to conceal. I put the concealer on my hand and use the brush to pick up a small amount and apply to the skin. Lightly blend using a patting motion with your concealer brush. Less is definitely more to prevent the caked look. Let it warm and settle into your skin for a couple of minutes before deciding whether you need to add another light layer. I personally found a couple of layers to the worst areas worked very effectively at concealing the rashes. You can then add a smidgeon of loose translucent powder to set the concealer and take any excessive shine down. I also recommend having a selection of concealers in different textures and levels of coverage as my skin fluctuated on a daily basis - sometimes a cream stick concealer would be more effective than a liquid concealer. Using concealer instead of a foundation enables you to target the areas that need coverage and creates a more natural look.

My favourite concealer is Gucci Concentré de Beautè Concealer - perfect texture and shade match for my skin. I use the Givenchy Prism Libre Skin Caring green corrector. Runners up are the Tom Ford Traceless Soft Matte stick concealer and Givenchy Prime Libra concealer. Not cheap but a concealer lasts forever! I have heard that E.L.F concealers are very good and they are very budget-friendly.

My favourite concealer brush is the Hourglass No.8 Large Concealer Brush. I bought mine brand new from Ebay for less than a third of the RRP!

My husband regularly commented that he couldn't tell I had any rashes at all once I had my "face" on. It's been a major psychological issue for me - the rashes are disfiguring and as a woman it has really affected my self esteem and confidence. Being able to subtly conceal the rashes helps me to be able to leave the house and face the world without people staring or worse, commenting about my face.

I hope my advice above is of help.

Whatafaff21 profile image
Whatafaff21 in reply to LalaH52

LalaH52 i think you’ve hit the nail on the head there about confidence and self esteem. Before I knew I had lupus it was very limiting with work and my ‘face to the world’ school run even supermarket. People don’t mean to but the stares and looks and direct comments or awkward startled faces were a bit tiresome! You sound remarkably adept at this- my first thought was you should offer tutorials!! Because I don’t know the first thing about makeup- as you say above products usually just clung to my skin and made it look off or Flagg or patchy or just like a wall of cement! I excitedly received the It CC concealer yesterday so will try with this in mind - I actually also love Japanese and Korean products as I found that they were so helpful when I didn’t know I had lupus and lived out there. The moisturisers specifically for some reason.

Am amazed and impressed by your skills and advice- Thankyou. I will look into these and take your tip about the light reflection. I don’t own a makeup brush so need one of those too!

Thank you!! 🤩

StriatedCaracara profile image
StriatedCaracara

My wardrobe changed loads.I now have lots of hoodies and hats, including peak caps to go under the hoodies.

Ends up being quite fun. It is dressing like a celebrity. Takes time but you get there. Found it hard saying bye to some summer clothes.

Whatafaff21 profile image
Whatafaff21 in reply to StriatedCaracara

I like the celebrity approach. Dark shades too!

Turquoise-1 profile image
Turquoise-1

Hi Whatafaff21

If your anti-malarial medication is Hydroxychloroquine then it could be that causing your face rash (as well as Malar rash 🙁).

I had the most awful adverse reaction to Hydroxychloroquine including burning, sore, stinging, red facial skin; It felt like acid had been poured over me …. Horrendous❗️

Rheumatology advised me to stop taking it immediately- I will never take it again, far too many side effects. (It doesn’t suit everyone). GP prescribed strong antihistamine.

It an expensive faff with all the skin lotions & potions, trial & error finding what suits! My face tolerates L’Oreal Revitalift SPF 30 (buy x2 when half price & stock up), good old Nivea SPF 50 5star rating tops up SPF on face, body skin will tolerate Sainsbury’s own brand SPF50. My GP refuses to prescribe SPF despite me having a pre payment certificate (I don’t get free prescriptions).

Dermatologist recommended I smear my face with Vaseline for swimming as the chlorine & chemicals aggravate my face so much. I prefer long sleeved rash vests or swimming costumes & swimming leggings.

I have a lot of baseball style caps which I’ve spent a fortune on over the years so didn’t want to spend a fortune on specialist SPF ones. Therefore, I bought inexpensive blackout curtain lining, cut into generous circles to line my caps. Works a treat! (I don’t sew them in, just place inside for ease) 🧢 🌞.

UV umbrella is worth purchasing for school walks ☂️ etc.

Green coloured cover stick &/or green foundation covers red effectively, just put your preferred coloured foundation on top.

Good luck with everything 🙂

Whatafaff21 profile image
Whatafaff21 in reply to Turquoise-1

Thank you! I’ll call the rheumatologist back tomorrow as when I called yesterday they said I was just adjusting! But you describe how it was on day 1/2 perfectly! It’s better today though! Will take that Vaseline tip. Thank you! 😊

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