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TobyJug
03-07-2009, 06:57 PM
Only about 30% of Lupus patients have the classical 'butterfly' rash that is associated with lupus.


I sure didnít until I saw it a few times doing some research 2day....
Just thought I share this fact with u all..

TJ

BonusMom
03-07-2009, 07:39 PM
Interesting that only 30% have this "classic" feature of SLE.

I have not had the butterfly rash on my face, but I do have bilateral pigmentation darkening on both sides of my neck in exactly the same spot/same shape.

I did have a rash on my ankle that lasted a few days, but it didn't weep, itch or anything.

Perhaps that's part of why I'm still in denial--I haven't had any of the supposed classic signs of SLE. I know I should count my blessings, but it makes me doubt the diagnosis at times.

Rastagirl
03-07-2009, 09:36 PM
I only had that butterfly rash over my cheeks and nose in the very beginning. Probably the first year or two. Then is disappeared...never to return. Not to say I didn't have plenty of other weird rashes in strange places. But I don't recall ever seeing the distinct butterfly one since then. Interesting...only 30%...seems like it would be more. Lots of people I've talked to have experienced it.

What a strange, strange disease...Lupus. What in the world went wrong in our ancestor's genes to bring this out in so many people. If it even is our genes. Makes me wonder sometimes if this all came about when our ancestors were exposed to maybe...radiation...or something in our environment that mutated genes. I feel like I'm plagued with autoimmune disorders from both my mom's and dad's sides of the family. My mom's side has Lupus and Crohn's disease and my dad's has thyroid conditions like Hashimoto's. Guess I was doomed by the family I was born into. :( Oh well, at least they're all kind, considerate people with good hearts. :)

Sorry to ramble on and highjack your post, Toby. This was about butterfly rashes, right?

:) :)

Lori

TobyJug
03-08-2009, 02:51 AM
That makes me think Rastagirl I have now seen crohns mentioned a few times in association with Lupus...

I have Ulcerative colitis myself and we have colitis, crohns, rheumatoid and arthritis running in my mom's family..

MMMM makes me wonder if it is related...

Angel Oliver
03-08-2009, 06:27 AM
Hi everyone i need to ask you all something on this subject.

Whilst i was in Florida in 2000 and 2001 (ok im bragging here about my holiday too lol :) ) it was so hot. Obviously coming from the UK i was not prepared for the humidity and the heat but i did wear high factor sun block.
Well, after a week there....my cheeks had this rash and my face ballooned. My eye actually nearly dissapeared and i was embarrassed. It was a butterfly rash i think brought on by the sun. Ive never really thought of it until now.

Over the last couple of years i have noticed on both sides of my neck...like frankinstein....a patch of dark pigmentation, i have even tried to wash it off until i realised it wont go away its on my skin.
More recently i have noticed on both cheeks, dark pigmentation and on the top inside on my nose...a red light rash.
It is not like in the photos i have seen on here, but it is like a butterfly but dark and i am fairy light skinned....oh except for when the fake tan comes out. This rash the dark rash is always there and sometimes gets worse.

Is this the same rash? I am 39....not that age makes a difference?

Love
Angel.xxxx

TobyJug
03-08-2009, 07:13 AM
yeh that is to do with Lupus sometimes only a red rash or colour change on the face appear other than the famous butterfly rash

rob
03-08-2009, 07:27 AM
I've never had the butterfly rash on my face ever. Not once. Quite often I hear folks talk about seeing a rheumo who says "Oh, it can't be Lupus" because the person has never had a rash on their face. Maybe some of these rheumo's should follow you example Toby, they might learn something.

Angel Oliver
03-08-2009, 07:38 AM
Oh how interesting.Thanks. Even the neck thing?

sarahp
03-08-2009, 10:21 AM
Wow this is interesting because i have a dark patch on my neck, on both sides in exactly the same place:wacko:
Is this something to do with Lupus then because my Rheumy said it was chloasma ??
Lov Sarah xx

BonusMom
03-08-2009, 11:39 AM
Wow this is interesting because i have a dark patch on my neck, on both sides in exactly the same place:wacko:
Is this something to do with Lupus then because my Rheumy said it was chloasma ??
Lov Sarah xx

Interesting, Sarah and Angel, about the dark areas on the neck. Mine are a bit below the jaw and they look like the bottom part of the butterfly (always believed this even before SLE dx) in that they go down to a gentle point (hair and makeup hide it--but especially noticeable without my "face" on). My rheumy was interested when I pointed the areas out, but didn't say anything specific about the cause.

Because I was taking birth control pills up until the mid-90's, I thought the darker areas of my skin were related to the meds (the so-called pregnancy mask). I had a couple of areas of darker pigmentation on my face too. Those went away when I stopped birth control pills. The ones on the neck didn't.

AyahsClan
03-08-2009, 12:55 PM
My butterfly rash can go from mild enough to cover with makeup, to a hot red mess of pustules, but I had no idea that the brown patchy areas around my neck were lupus related! My goodness I learn something new every time I visit here.

I thought the brown spots were where I had neglected to use sunscreen during my younger wilder outdoor years, but in reality, this area would have been mostly covered. The doc looked at it and never said anything. I massage the area with a sulfur lotion that seems to have lightened it a bit.

TobyJug
03-08-2009, 04:20 PM
Yeh Rob I agree some "medical specialist" could really do with some research into things before they open their mouth....
Specially because when u say something it can never be right....
But hey all good...

it is interesting to read about the rash because I myself for example have not really got it but I do get discolouration on my face and flaky bits sometimes..... but sometimes it can come and go within hours... the other day I had a little stress and my mate popped round and asked me if I had just been running because I looked so flustered... then a few hours later when the stress settled it kinda went away-ish again.....

sick n tired
03-08-2009, 09:20 PM
I have never had the malor rash either, but the dark stuff on both cheeks and one side of my neck, yes. Can any of you with the dark pigmentation feel yours? I Mine felt like lite sandpaper and itched..at least at first.

sick n tired
03-08-2009, 09:21 PM
Oh btw...mine, the part that itches and I can feel has almost gone away because of the high prednisone I was on. I can also say it seemed to be sun related....

SuperGiv
03-08-2009, 09:40 PM
Mines weird, it doesn't swell, but i get sores and its very red (when I flare). Although when I was like 13-16 I had real bad acne, so have always had a bad complexion and wasn't until my Rheumy pointed it out that I realised! I just assumed it was natural, but then when I thought about it, its only red when I'm ill, usually I have quite good skin. Its started getting worse though, I get like really itchy sores on my skin :S. Probably will be made worse over the summer as I'm going to various places including Greece which is always sweltering

Mommyof1
03-10-2009, 12:30 PM
Hi. I have yet to be diagnosed. Had seizures at 15 and a 2 yr bad depression and had symptoms on and off of just not feeling good for years. This past september everything started to come in full circle. I too have gotten a rash. Its flat and can be from pink to dark red almost reddish-purple. On my nose and cheeks and sometimes circles up onto my forehead and sometimes on my arms and chest. Theres no bumps/pustules and it only lasts hours at the most. I am affected by sun, heat and lights which are the major causes, emotional upset and it comes and goes when im flaring although every flare is different. I have always been sun sensitive but its here recently the fluorescent lighting is hitting me hard. I get a rash that looks just like a sunburn but it goes away within a day and it even burns although everything feels like its coming from the inside. The only thing I have been diagnosed with so far is raynauds. I have many other symptoms. So maybe as you all say there ARE more people with the rash...but are they the people who aren't even diagnosed and dont know they have it? Something crazy to think about :) Hope you all are well! -Brit

Jesse
03-10-2009, 03:54 PM
Interesting post. I have never had the butterfly rash. The only rash I ever get is when any part of my body is cold, that part turns bright red and itchy. Yet, all the literature leads one to believe that the butterfly rash is an important part of the dx of lupus, along with the ANA bloodwork. The thing about lupus is, it's so variable and hard to pin down so I'm not surprised that 70% of people don't get the rash. What I don't understand is why they mention it so much in literature since only the minority get it?

AyahsClan
03-10-2009, 05:52 PM
Interesting post. I have never had the butterfly rash. The only rash I ever get is when any part of my body is cold, that part turns bright red and itchy. Yet, all the literature leads one to believe that the butterfly rash is an important part of the dx of lupus, along with the ANA bloodwork. The thing about lupus is, it's so variable and hard to pin down so I'm not surprised that 70% of people don't get the rash. What I don't understand is why they mention it so much in literature since only the minority get it?

I think because it is an easy and disease specific symptom. For example, one can have rosaecia on the face, but it is not like the butterfly rash. One can have rashes, acne, or any other type of skin problem, but nothing is exactly like the butterfly rash of lupus for those who get it. I could be wrong but I don't think there are any other diseases that present exactly like it.

BonusMom
03-10-2009, 07:38 PM
The hyperpigmentation on my neck does not itch and is not raised.