Just wondering...

[Willow7733]

Does this look like a lupus rash that others have? It gets more red if I am tired or stressed and it sometimes hurts/burns. The rheumatologist that saw me in the hospital said right away he noticed the butterfly rash on my face as soon as he walked in. Just wondering if this looks like yours and what can be done for it??

[Apricot100]

Hi Willow, I'm not a clinical expert but from my experience of having lupus it does look like a lupus rash.

If you are already seeing a rheumatologist then I assume you are already taking medication? The rash appears for different reasons for different people - mine pops up when I'm close to a flare, stressed,but been out in the sun. If also reacts to certain foods.

I've always had sensitive skin so through trial and error now only use skincare that is gentle. I've found coconut oil to be a relief from very dry and inflammed skin. Hope this helps x

[Willow7733 in reply to Apricot100]

I am on Plaquenil, so new to all this, but I thought maybe if you are on it, the rash would finally go away. I am really not sure what Plaquenil is supposed to do.

[Apricot100 in reply to Willow7733]

I've no experience of that drug I'm afraid. Your rheumy should have explained the drugs prescribed to you. I suggest giving him / her a call for more information and to discuss help with the rash if it's painful. X

[misshappy1 in reply to Willow7733]

Hi Willow,

Thank you for sharing as I too, have recently been diagnosed with SLE, with underlying APS.

(APS - have known about since 2003). However the flare on my skin only recently happened, started last August but has taken a long time to get medication sorted.

I would also prefer to use more natural means, but have started using two prescribed creams, one with a lower dosage steroids, as I am worried about impact of them on my face. I am also using Aloe Vera gel- which is 99% aloe vera leaf gel, and after the weekend I am going to track my diet to see if any other triggers.

My medications also involve the Hydroxychloroquine and I have found lots of fresh air, walking and more sleep, seem to have started helping the rash.

I hope this helps, would be more than happy to keep sharing thoughts on clearing the rash etc.

Would love to know more too, and how I can start looking like mummy again, that my children would like back.

All thoughts very appreciated.

Allie

🙂

[nanleighh in reply to Willow7733]

I have been on hydroxychloroquine and low dose prednisone for over 8 years and my rash never goes away. I also have it on my neck. It sometimes burns like sunburn. I don’t put anything on it except my regular face creams. I did know if that helps at all. Take care.

[Willow7733 in reply to nanleighh]

Mine burns like a sunburn too. Yesterday it was bad.

[Tiggywoos]

Hi Willow7733Just to say hydroxy takes a good few months to work so sadly have to be patient . A nice big hat and slap on factor 50 on face every single day even when indoors .

Take care xx

[Willow7733 in reply to Tiggywoos]

I just bought some sunscreen 110 for this summer. Just don’t want this rash to get worse. People at work are so rude! “Omg!!! What happened to your face!!” I never know what to say. I just answer “I don’t know...” 🤷‍♀️

[Tiggywoos in reply to Willow7733]

Oh Willow7733 I do understand 😔... you’ll hear it all ... “ have you tried detox “ oh it will be an allergy , have you changed your washing powder bla bla bla ... This forum is fantastic and full of understanding lovely people who completely relate .

I wish I could say the rash goes quickly but it is took 3 months on the hydroxy for mine to calm down but I’m only on 200mg as it’s based on body weight (I think ) .

Honestly I looked like I’d been set on fire ..,someone even asked me if I’d had lip filler gone wrong (a consultant 🤦‍♀️) . It will go down but it’s worth keeping a note of when it gets worse . Mine is definitely affected by stress , sun , over doing it and GARLIC !!! I avoid all red foods and all histamine producing foods (like aged cheese , wine , pickled or fermented food ) Sorry I’ve gone on a bit 😂.

Take care and stay safe x

[Willow7733 in reply to Tiggywoos]

I just passed four months on hydroxy. My next appointment with the rheumatologist is the 5th of May.

[Spanielmadlady in reply to Willow7733]

How about the truth? Im not afraid of telling anyone it's a autoimmune reaction of the skin neither am I afraid to tell people I've got lupus or sjorgens the more we talk about it the more understanding we might get xx

[Willow7733 in reply to Spanielmadlady]

I never knew what to say because I didn’t really know what it was. Just recently diagnosed.

[Spanielmadlady]

Hydroxy works by calming your immune response and takes at least 8 weeks to start to work 6 months for full effect.it may not be enough on it's own you may need another immunosuppressant added in at a later date..to add to what tiggy said both lupus and hydroxy cause photosensitivty so staying out of the sun as much as possible,covering up head to toe inc wide brimmed hat,sunglasses and factor 50+ creams are a must even on cloudy days and in winter.sun anywhere on your skin will trigger a response in the places you get rashes.same goes for fluorescent lights and lightbulbs .I'm slowly changing lightbulbs in the house to uv free ones and ive swapped my woolly hat for my factor 50 hat this week but think I need my woolly hat back on this morning 🥶 xxx

[Tiggywoos]

Great point from SML about bulbs.. . I’m awful I’m the big sainsburies .. need to lie down when I come out 🤦‍♀️. Not good in airports either xx

[Spanielmadlady]

Never thought I'd see the day I would be sat indoors in sunglasses lol 🙄 luckily I dont give a hoot what people think but for those who do I can imagine it being quite a burden .Stay safe keep smiling 🤗 xxx

[Willow7733 in reply to Spanielmadlady]

I have been like that for a few years now. I need to wear sunglasses or I am uncomfortable. I don’t care what people think.

[Spanielmadlady in reply to Willow7733]

People dont realise all the little things that impact on us too x

[Willow7733]

My face is burning today. Is there anything over the counter I can buy to calm it down a bit??

Redness on face.