Lip Rash
I have only ever had the signature butterfly rash on my face once. That was the start of the diagnosis for me.
But I have had an unusual rash on my lip for almost 2 years. It comes and it goes. It feels like poison. Ivy it burns and it tingles and within a few hours I have dry red inflamed top lip in a odd shape. It's never the full lip. It's never. The centre of the loop usually runs around the outside. Sometimes it goes to the side of my lip and inside my mouth.
It lasts a week sometimes more. Sometimes it starts to heal and then it comes back with a vengeance. You can hardly see it. It looks like I've just got dry lips but it burns and it's constant and it feels tight like I need to take the top layer of my skin off 🤣
The doctors haven't told me what they think it is. I've tried everything you can think of over the counter and on prescription. I'm wondering if this is my 'butterfly rash'? Or it's just another rash associated with lupus. Nothing seems to ease it. I've tried all your sorts of bombs. Zinc creams, pawpaw ointment, vitamin A ointments. I've tried general lip balms, oils and even scrubbing it off with a lip scrub.
Has anyone else experienced an odd lip rush and do they have any advice on how to ease it or prevent it?
Hi! Lupus is weird, as you probably know. So the lip rash could maybe be lupus related. If you haven’t I would highly suggest going to see a dermatologist. They will be able to help more with any kind of skin issues. And I would call your lip rash a skin issue. If you have, it might be worth getting a second opinion. I hope you can get it figured out. If you do get a diagnosis. I would love to know what they decide it is. Only If you’re comfortable sharing. I hope you can get some answers soon. Big hugs!
Amber (lupus.net team moderator)
Thank you🤗
I will keep you posted with my journeyyes! Please do! One thing I meant to mention last time and forgot. Was that you probably shouldn’t be using anything abrasive like scrubs or exfoliants bc they have the potential to make it worse. But If we can help in any way please reach out. If you are trying to reach me please tag me. If you don’t, I don’t always see the post bc there are so many posts. Big hugs! Amber (lupus.net team moderator)
I have just started getting this the past couple of months! Just my bottom lips swells up and it feels blistery but to look at, like you say, it's just looks dry. It feels so uncomfortable and as you say, nothing seems to ease it. It just randomly comes and goes........ So I feel you. I've read that this is a lupus symptom
Mimma
(Mimma), I'm sorry you're dealing with a lip rash right now. Lupus definitely keeps things 'interesting', doesn't it?
I hope the rash clears up and you get some relief very soon!
Best, Erin, Lupus.net Team Member.do you get cold sores? It sounds kind of similar. But I would make sure you take pictures of it when it flares up. Like I mentioned above, if you don’t have a dermatologist that you could get in with. Then I would suggest making an appt with one if that’s how your insurance allows. If not ask your rheumy or pcp to put in a referral. I just feel like it’s better to let each speciality deal with its issues. But that’s me. If we can help at all please let us know. Big hugs! Amber (lupus.net team moderator)
I also want to add I did have a rash in my neck in 2022 that felt like fish scales but looked like soft dry skin. Not as dry and rough or cracked like it felt to touch. No itch no burning... Nothing.
It came and went within a week or so on 3 seperate occasions.
Never had it since!....again it was unexplainable and untreatable with topical products etc, like Amber mentioned in a previous comment, Lupus is just . . . weird. It definitely likes to keep a person guessing! And, I second seeing a good dermatologist, if you can. I know getting in to see specialists can be a challenge, but it might be worth the effort.
Hopefully, this latest rash goes away on its own, like your neck rash.
Best, Erin, Lupus.net Team Member.
