[mmair]

Hello everyone,

I have a few questions about the "Lupus" rash. Butterfly/ Malar rash "schmetterling" etc.

1. Does it bother you? (burning, itching, or just cosmetic unappealing)

2. Do other people ever mention it? Question you what it is, or make comments?

3. How do you answer such questions? Do you go into explaination about the disease, or just Simply say "it's a rash" or "it's from the Sun"?

I have a wonderful "textbook" Butterfly. It is more or less always present. Sometimes more prominent other times barely visable. I like to call it the Lupometer. It tells a little bit about how active the disease is. In general it doesn't bother me, it is not painful nor does it itch, etc. Cosmetically when it is not glowing red, it looks quite healthy! When it flares up (mostly from the Sun and then within minutes) often people say things like "oh, did you get a sunburn! What did you have on for a mask that made such strange marks?" and " Been in the fresh air? I can see on your face, or are you embarrassed?"

Mostly stupid comments, to which I respond "ja, it comes from the sun" Then they assume it is an Allergy. Or I say it comes from my illness, which is also sun sensitive bla, bla,bla which of course is to detailed and they don't want to hear it or can't comprehend it anyway.

Worse is the comments I get about my hands (thanks to Maurice Raynaud) I have lost the tips of 2 Fingers and always in the winter have necrosis (black crusty wounds) on the fingertips. I have stopped trying to explain and just make up wild stories.

I was on Mt. Everest last week, and it was sooooooo cold!
or, I was in Canada on an expidition and got attacked by Wolves.......well a "Wolf" is actually responsible so it's not a total lie

I would like to hear your explainations and the reactions you have received.

Thanks,
Monique

 

[Katharine]

Haha Monique :lol:

I love your explanantions for the raynauds :rotfl: . Fortunately my raynauds is so mild that I hardly notice it other than funny coloured fingers and feeling cold.

Yes, when my rash comes out quite severely (which luckily for me is not too often) it does burn/itch, it's rather tender.

People do mention it, they tend to think I've eaten something weird and reacted to it. The last time it was so bad was in January so the sun wasn't really a good excuse!

Like you, I don't really answer people's questions. At most I would say that I'm photosensitive, something that people kind of "see" as I'm always covered from head to foot.

Katharine

 

[Clare.T]

Hello Monique

The lupus malar rash can sting or burn. I dont have that sort but my face was severely affected by subacute cutaneous.
I am wondering who asks you about it. My experience has been that nobody who mattered to me ever asked. If anybody did it was a sure sign that they were people I did not want to know better. I have had to wear makeup for years but I don't really believe it wasn't obvious to anybody that there was somerthing very wrong although they probably couldn't see quite how bad it was. I have no way of knowing if it was a disqualification for jobs or if some people avoided me because of it. But as I say I couldn't care less about that sort of person. Maybe in a contrary fashion, that's why my friends have always been the best and truest.

I have lived in several different European countries and the USA. Funnily enough there was only one in which I was questioned several times about it. :wink2: The answer I gave depended what I felt like saying at the time which was sometimes Why not mind your own business.
A couple of people decided they knew what it was and kindly started recommending treatment, like bathing in the Dead Sea "An excellent cure for psoriasis"
Another listened to my brief explanation then informed me that autoimmune disease was impossible so it must be either an allergy or psychological.
I doubt if I will ever find anything funny about it.

Cheers
Clare

 

[mmair]

So true Clare T. Mostly the people that ask are exactly that , No one I care about. It doesn't happen so often but it is always nerving. yes i have also heard the well meaning advice. Dead Sea and those wonderful little Psoriasis eating fish from turkey. And the best is always, for my "poor circulation" blue fingers and toes I should try alternating baths of Ice cold then hot water! Exactly what not to do with Raynauds. Thank god I am not nieve enough to follow such advice. I am afterall a Doctor (Pathologist). hmmm... Allergies and Psychosomatic disorders, that has to be Germany! Only here can you find so many people that "yesterday I had a kreislauf zussamenbruch! (Circulatory collapse) and survived it, a day in bed, a little Ti Chi and today back to work!

Grüß
Monique

 

[Roubi-1977]

malar rash/psoriasis/ plaquinel

hi all

I'm from Jordan (i'm 30 years old ) I have lupus and psoriasis.Now I'm on cellcept and prednisolone..
My doctor prescribed recently plaquinel and I read it can worsen psoriasis. Have anyone who has psoriasis used plaquinel... I'm still considering not using it as I feel worried about my psoriasis..
I appreciate the help by the way the Dead sea in my country is a great help in psoriasis treatment
thanks a lot:wink2:

 

[LoopyLoo]

Hi Monique,

Gruss Gott! and welcome to the site. My husband and I fly to Germany (Munich) a couple of times a year and drive across the border to Austria to visit his daughter. It amazes how much the dialect changes within just a few km!

I'm sorry to hear you get the rash, it really can be a pain. I feel I can hide any other symptoms I have but when I get the rash it really knocks my confidence. I have a good ointment which my dermatologist prescribes which can help clear it up.

The only people that have ever commented on the rash are those close to me that are aware of my condition. I do see people looking at me though and they are not sure what to say. I have been flaring recently and it's the first time I've been in work with it so prominent - boy did people body swerve me! Because my eyes were so swollen they probably thought I had been upset.

It sounds like you have the perfect response to those that ask you - I need to take a leaf out of your book. It's only in the last few months I've 'gone public' with lupus even though I was diagnosed in June 2006. I'm still trying to master my explanation of what it is without babbling or the person quickly losing interest!

The old Raynaud's is a pain eh? Sorry to hear that yours is so extreme. Mine is particularly bad right now with losing the sensation in my right thumb and middle finger.

Hope this helps,

Tschüs

Pam xxx

 

[mmair]

Servus Pam,

So you fly to Munich and drive to Austria, then you probably pass right by me. I live in Füssen (Hpfen am See) the view from my living room is the Castle Neuschwanstein. I am 5 km from the boarder to Austria and about 100km south of München. Actually I don't have to many problems with the MCTD, I also have MPA. I had 6 months of Endoxan (Cyclphosphamide) and Plasmapherisis plus 1000 mg Cortison. Since then I have been on 300mg Imurek (Azathioprine) and Resochin. I am in more or less a partial remmission. I still have nephrotic syndrome (about 3 grams Protein per day) but my kidneys still work. I have Raynauds (which has lead to several amputaitions) and a chronic cardiomyopathy. I have been on disability since 2003. I work just a few hours a week (a so called Mini-job). I also have a 8 year old daughter (2nd grade). I am divorced, but have a good relationship with my Ex.

You are from Scottland? I would love to visit there sometime. My best freinds (in school) mother was from scottland. Maybe sometime I will get there (it's on my list, along with Rome, Prague et al.......

Liebe Grüß
Ciao
Monique

 

[BigSis]

Hi to you Monique
Luckily my malar rash is quite discreet, it's my raynauds that causes people to react.
It doesn't bother me since I've had it since my teens and I haven't had any gangrenous bits.
Some people have actually gasped in alarm at my blue and white hands as if I had leprosy


By the way had a lovely holiday in Lindau which I think must be quite near you.
Pictureque painted houses and friendly natives:wink2:

 

[Judy64]

Butterfly/Malar rash

My granddaughters called me their "Spotted" Grandma

 

[tristalynn]

Jordan,
My name is Trista I'm 25 and was diagnosed with Lupus since I was 9. I have been taking plaquinel since I was about 12 or 13 and only recently was diagnosed with psoriasis. It has not made my psoriasis worse and plaquinel is one of the best drugs on the market for Lupus so I would consider taking the risk. It might just all have to do with how severe your psoriasis is and I'm sure it effects everyone differently! I have psoriasis on my scalp and sometimes on my elbows and hips but it is easily treated and like I said the plaquinel has not made it any worse. I hope this helps you!

mmiar,
When I was diagnosed I had the malar rash pretty bad and I couldn't remember how it felt until today I had red spots on my face that were itchy and burned and my face felt hot. I was kind of waiting for it to go away hoping it wasn't my Lupus but unfortunetly its still there that's when I googled the question does the malar rash itch or burn and I found this site. When I had the rash before I was just a small child but I do remember people were really mean about it. They would ask me if I had a sunburn or if I got into my mothers blush. I wish back then I would have had some good come backs!

I always explain lupus in simpler terms. I say Lupus is like suicide cells so when you get sick the good cells fight each other instead of the bad cells and it makes it harder to get better and it can effect different parts of the body.

I was wondering if any of you had tattoos and if it made u sick when you got one? My doctor told me not to get one because it could cause me to flare up and I wanted to know if that was true? I really want one!

 

[VegAthLes]

I have a pretty noticeable butterfly rash, as well. Sometimes it just looks like annoying acne, but if I'm sick or overheated or been out in the sun for more than a minute, it gets bright red and looks like a sunburn. Since I live in Florida, most people assume it's a sunburn. They'll say something like, "Oh, you got some sun!" Usually I let it go rather than explain I have some kind of condition (which hasn't been diagnosed) that affects my skin.