SCLE

[Raven_claw]

Recently diagnosed with SCLE. I started hydroxy 3 weeks ago but having a really bad week. Leg pains headaches and every morning I wake up completely full of snot (tmi sorry). I think it’s too early for the drugs to start working. I did burn a bit last weekend despite wearing factor 50 which I reapplied twice and kept a hat on. I have had a really busy/stressful week with work (WFH). Could this be a flare Or could it be just a cold or allergy?

[Spanielmadlady]

Hydroxy takes at least 8wks to work.ive been on it for 18 months now for sle.when I started it I had a bad head every day for a month but managed to ride it out nothing since.you may have some uv sensitivity up 60% of sle suffers do .even though I wear factor 50 a hat and cover up from head to toe I still get headaches and aching joints.once i stay indoors for a few days it goes x

[Muff20]

Hi, sorry you are feeling so unwell. The hydroxcholriquine does take a while to get in your system and for you to see it's benefits. I also have alot of nasel inflammation and allergies. Has anyone suggested taking anti histamine? Get plenty of rest. 🤗

[Raven_claw in reply to Muff20]

Thanks I did take an antihistamine yesterday I was so desperate as never felt so ill. After sleeping most of the day and night I’m feeling better.

[heatherevans28]

Do you mean SLE? If not, what does SCLE stand for please?

If its lupus, then no fortunately this does not sound like a flare. Likely an allergy or a cold from being a bit run down. Some extra fluids, paracetemol and an anti histimane are all things to try. As others have said hydroxychloroquine can take months to work so its too early to tell whether that is having any effect yet.

I presume from your post that you have been diagnosed with photo sensitivity as part of your lupus. If you are exposed to too much UVA/UVB/blue light then your reaction will be systemic in that case. It won't show as a burn but you will quickly know about it. Lupus UK has a really good article about lighting your home that might be of assistance if you've only just been diagnosed. I change all the bulbs everytime we've moved house to limit reactions. Its also good to make nurses aware of if you are hospitalised as the lighting in hospital is terrible for photosensitivity.

If you got burnt with factor 50 on then its likely that you aren't applying enough or that small areas were missed with your fingers. It's so easily done and most people don't apply enough. The recommendation is to apply two thick layers per application. You then only need to apply if you are outside for a long time, sweating or getting wet. What I do is after my skin care in the morning I will apply one layer, wait while I do my teeth and then apply another layer. You can do them immediately after each other, but I just find it easier once some has absorbed. A silicone sponge can also be helpful to make sure weird areas aren't missed.

Make sure you are covering all exposed skin with a high SPF and high UVA rated sun cream (5 stars or 4 plusses). Hands are one area that is otorious for being forgotten or reapplication being missed when washing hands. If driving it's your hands that will get most exposure to UVA through the windshield. It's really important to apply suncream to the backs of your hands everytime you wash them.

Hope this helps and you're symptoms settle soon.

[Raven_claw in reply to heatherevans28]

Thanks for replying. Subacute Cutaneous Lupus is what I have been diagnosed with. I put my sunblock on as soon as I can in the morning but yes maybe missed some. Felt the worst ever on Saturday which was really scary slept most of the day and night and much better today. I didn’t really give the hands much thought obviously with all the extra hand washing at the moment I need to be better at reapplying much more frequently. Thank you for pointing this out.

[susiechick]

Hi what is it you have x

[Raven_claw in reply to susiechick]

Subacute cutaneous lupus

[susiechick]

I have SLE LUPUS

Iv had it nearly 25 years before I had holiday sun beds not any more

After 3pm is best and always cover as well as sun screen stay in shade

It’s such a change but you have to listen to your body

The sun makes you feel like sunstroke and burn bad I double with blisters

I also take same meds

Hope you find a compromise.

[Raven_claw]

Thank you it’s all so new! I’ve always been careful with sun cream but always loved a sunbathe not anymore.