[angieb]

Hi all

Can i just ask what percentage of of people with lupus have the butterfly rash? i do get very red cheeks quite often , but it doesnt really spread across my nose . A doctor at work heard me talking to my boss about stuff and just looked at me and said Well you dont look lupusy to me it must be something else , if i dont allways have the rash in the classic way does this mean i dont have lupus? I am getting very confused and frustrated. cant wait to see consultant ,it better be soon, i just need some kind of clarification or information.

thanx

 

[cad]

Hi Angie,
I was told by my rheumatologist that I have the lupus malar rash, but it was always something that I was very unsure of, my rash did not look steretypical of the extreme rashes you see on the internet, but it is a butterfly shape and did become photosensitive.
I would say that just because one doctor who may not have ever have seen a lupus case in his entire career first hand commented likr that, it does not mean that your rash is not significant.

Does your rash get more prominent or rise up when you have been in the sun or does it seem to be more prominent whe your other symtoms are?

Thi is definately a question that I have seen quite a few people ask and is very difficult to answer even when seeing a picture as it is still not always clear.

I think the only way of getting a concrete answer is when it is examined by a specialist who knows how to identify it, rhematologist or dermatologist.

This is difficult one, sorry if I haven't been more help. Maybe someone else will come along with a more definitive way of knowing.

Good Luck

Take Care

Cassie

 

[Fairy]

I tend to get a pretty classic butterfly rash, but when I was being diagnosed I had lots of doctors tell me they had no idea what it was. It was screamingly obvious at that point - had they just opened a text book they could've made the connection (mine's so classic, I'm actually in a text book now :hehe Take what that doctor said with a very large pinch of salt... Annoyingly I've got it at the moment, although not particularily badly - its just over my cheeks, so I've got a lot of concealer on to hide it.

 

[Clare.T]

Hello Angie
What that doctor said is meaningless.
The figures are that 20%-30% present with a lupus rash & I supppose that means of those who get an SLE diagnosis. Obviously, 100% of those with skin lupus have a lupus related rash.:hehe:
Anyway, the point is that many do not present with lupus skin problems and about one third never have any in the course of their illness.

I agree with Angie about judging by appearances especially if you are not an expert. The malar or butterfly rash can look like a healthy blush.
Don't worry about idiot remarks.

I hope you get your appointment before long. Often you can get an idea of how long the wait for a first consultation is, from hospital websites. Or call them and ask

Good luck
Clare

 

[cemc]

Well, I've been told dozens of times that I have a classic lupus malar rash, but apparently don't have lupus! I have never had positive lupus blood tests, and all the times I have been assessed by a rheumie I haven't had enough other definite symptoms to diagnose (though I get plenty in between appointments!).

 

[angieb]

thanx guys, always know that some one will have an idea of how i feel on here.

 

[KarolH]

Angie,

Like you my rash is not typical. Mine is more of a redness and dryness that extends over the nose and down both sides but does not touch the smile lines of my face............make sense?

It has a dryness to it if you touch it and lotion does not make the dryness go away.

 

[angie1]

Hi Angie,
Great name, by the way!

What kind of doctor can just look at a person and assume they do or do not have an illness? That comment would have sent me flying! I have redness when I'm really tired, if I'm really hot or in the sun for too long, or if I'm just not feeling well, and it varies in intensity. Mine is very unpredictable. Hope you find an answer soon and don't let silly, uneducated comments like that bother you. Take care,

Angie

 

[LolaLola]

Angie, what you have been told here is totally correct.
I do have malar rash but it is variable with how I feel, UV lights, stress etc. Also I take mepacrine which is a fantastic help with the skin. My Daughter has no rash whatsoever and never has had. She is not even pink!

I can only reassure you that this Doctor was talking rot, and this was rather unhelpful and rude of him when you were speaking to your Boss.
x Lola

 

[pollianna]

Hi all, weird one isn't it. My Malar rash is actually a blush and always has been. Dr D'Cruz noticed it but I explained I always viewed it as the little bags under my eyes turning white. Now I see the butterfly shape. I guess it's about perspective. I have never had raised bumps or anything like that, it blushes redder the worst I feel and then goes away. I also have a lot of edima under and around the eyes when in flare

 

[*~aurora~*]

Hi all, weird one isn't it. My Malar rash is actually a blush and always has been. Dr D'Cruz noticed it but I explained I always viewed it as the little bags under my eyes turning white. Now I see the butterfly shape. I guess it's about perspective. I have never had raised bumps or anything like that, it blushes redder the worst I feel and then goes away. I also have a lot of edima under and around the eyes when in flare

THAT IS TOTALLY ME!!!!!!!! I freaked out when I read your post because the bags under my eyes HAVE been whiter-- and my friend keeps telling me my blush is too dark and I'm like "blush? I haven't worn makeup in at least a week..." so I just assumed it was a tanline or sunburn.... but I FREAKING hate the sun so I avoid it whenever possible, so I don't know how that would have happened! I thought it must have been the sunglass eyes or something.

asfdkjwweojkdsl! Not to thread hijack but thank you! Even if that's not important to a diagnosis of lupus or anything for me, at least I can tell myself it's not an embarrassing sunburn and stop feeling self-conscious about it. :hehe:

 

[chel]

atypical?

Hi Angie,

I was first dxd with discoid lupus (without having a malar rash). My afflicted areas were my hands and feet. Years later after having been diagnosed with full SLE, I still don't get the classic butterfly rash. My nose will get beat red with barely anything on the cheeks when I'm flaring or exausted but that's about it. A different fun thing though is for quite awhile my vasculitis was going haywire. I'd be talking with someone and my chest and neck would get all splotchy and then I could feel one of my ears heating up to beat red. That was really odd-looking: one beat red ear and the other quite white. chuckling.:lol: