Hello my ❤️

[Buckley123]

Hey guys ❤️

I have found my skin is burning in the sun ☀️ not going red apart from my face but just getting really quite hot any ideas to why this is I never got this before all this started xx

[Lupiknits]

I’m not sure the “why” of it , but I’m sure others can tell you!

My experience is of skin burning very easily and I have a few selfies of the butterfly rash to show to rheumies. Other than than I have very pale skin that burns and won’t tan, so I’ve long been in the habit of using sun protection and staying in the shade. Since becoming ill I use an SPF50, and have been told to do so year round. I wear light cool clothing that shields me from the sun to an extent, and wear a hat.

Others have mentioned rash vests, but I don’t know a great deal about them.

Sometimes my face feels burning hot, and then I use a Vichy /Avene or other cream that calms redness. This can happen at anytime of the year, and I use the Avene Eau Thermale Spray.

At my Rheumy appointment today the consultant thinks I have erythromelagia (sp) which can takes up residence when my feet are not otherwise freezing. Eau Thermale Spray is a cooler and easy enough to use in the middle of the night before sticking my feet out of bed!

None of this might be helpful, but I’m sure others will be x

[Buckley123 in reply to Lupiknits]

Thanks for your reply I appreciate all your advice xxx

[Roarah]

Are you on HCQ? Sun sensitivity is a known side effect. Other meds, including over the counter NSAIDs also can cause photo sensitivity.

[Buckley123 in reply to Roarah]

Yes I am low 200mg

How are you x

[Roarah in reply to Buckley123]

Did the sun sensitivity begin after you started HCQ ? If so it could be that if before it would support connective tissue disorder too. It is so hard to tell sometimes what is the cause but what ever is causing it do try and stay safe in the sun to avoid worse flares.

I am doing well thank you. I hope you start to feel better soon too. Xo

[Buckley123 in reply to Roarah]

Thanks no it’s a recent thing

Since I’ve started taking hcq.

Must be that xx

[Salzer]

Hiya. I get that burning feeling on my face and feet . I posted a question about it here yesterday and got loads of really helpful responses that might also be relevant to you? Not sure if you saw it? Don't think I can link to it but it was called "Burning face" 🙂 🔥 How are you doing? Hope things are going ok?

x

[Buckley123 in reply to Salzer]

Thanks mate il have a look sorry for the late reply

Yeah not to bad not any further along just plodding along as you do 😂🥴

How are you xx

[Salzer in reply to Buckley123]

Yip just plodding along too hoping that one morning I'll wake up feeling normal🙄 Hope you get your appointment soon🤞and start getting some answers x

[Buckley123 in reply to Salzer]

I won’t 😂😂😂 I’ve given up now

I guess it’s a blessing that nothing can be found yet I know I’m not suffering as much as some people xx

[KatieRL]

Before being diagnosed with SLE I could go out in the sun without any trouble. Unfortunately, since then I developed sun allergy and I either burn or come out in spots! My rheumy/renal Drs advised (or should I say, insisted) that I never to go out in the sun without high factor sun cream, I always need to wear a hat and have arms covered!

I ignored the advice a few times and paid a high price, so now I always cover up. Lupus+sun doesn’t seem to go together! Keep well xx

[Frosty1960 in reply to KatieRL]

I know your pain. ❤

[Buckley123 in reply to Frosty1960]

Thanks frosty1960

Sometimes that’s all we need to not feel alone

How are you sorry for the late reply xx

[Frosty1960 in reply to Buckley123]

Hi Buckley, I'm looking forward to autumn cloudy leaden skys not so much of a job to go out.

Still have to sunblock but not so heavy duty, also lets my skin recover. Its been a progressive thing for me to point i am at now where even 50+ doesn't really help as you said hats, long sleeve tops i look for spf clothing any little help to get out but more or less its indoors in the main over summer. I hope you have more joy.

[Buckley123 in reply to Frosty1960]

Thanks frosty I don’t have as many issues with the sun tbh as you do sorry to hear this it must be a nightmare in the summer I love autumn 🍂 it’s my fave xxxx

[Buckley123 in reply to KatieRL]

Argh 😤 it’s so annoying it’s not even when it’s too hot it just feels like it’s burning but hardly ever get a rash

And my face flushes mainly in the night time and when I’m ill and indoors 🤦🏼‍♀️🥴 how are you xx

[Buckley123 in reply to KatieRL]

I did reply but seems to be at the bottom of the page Katie

Xxx