Hi my name is Anissa . I was diagnosed with Discoid Lupus and possible Systemic Lupus in March of this year.
I can't find any true rash pictures that match what I have. I was wondering if any one else has the butterfly on there face that has mucher darker brown (almost like a really good suntan) and then on your cheeks red ( like sunburn)? Also, is your hair really brittle and falling out by the clumps?
Are you taking Plaquenil? If so how long did it take to start working.
Is wise to put make-up on these spots?
Do people look at you like you have something contagious?
I am asked all the time if I have a sunburn. I am naturally dark skinned and always look like I have a suntan but never burn. It's from the lupus rash. I don't really know if they think it's contagious but I have been told I look like a raccoon.
My hair falls out all over, the car seat is covered and I clean it every time I get in the car. I tie my hair back when cooking and the family still gets hair in their food. I had very thick hair and it makes me sad how thin it is now.
I started Plaquenil in Feb. 2012, it has helped a little bit ( I take 400mg a day) but I still have flares and am currently on predisone (with the Plaq.). My doctor said it can take several months but may not stop all the symptoms.
Hello, I had the butterfly rash in my face really really bad it was kinda embarrasing to me since I always had good skin, everybody always ask me what happen to your face?.. Besides the ugly rash it was painful and it itch all day and night, and yes about 75% of my hair come out I had patches on my head so I decided to.cut, my hair to my shoulders and I donated 14inches of my hair to Lacks of love…cancer kids…i also had the rash in my chest, arms, ears, and eyebrows my dr gave dr gave me a.creme to use on my rash and it help…but he end up putting me on prednisone and thats how the rash finally went aways…he say I had a flare up so thats why I had a rash everwhere…
Hello Anissa, I have DLE besides SLE...you can have both together or in time people with DLE will come to have SLE also. I had the butterfly rash years before diagnosis very inflammed red it was from one cheek to the other....you can have it hit you in different shades according to pigmentation of the skin....my hairs not gone brittle just kept falling out so now i keep my head skinned on grade 1 can't see the point in growing it then it dropping back out again plus i've had it mimic ringworm.
I'm attaching a link regarding skin issues with DLE besides pic's
I was on plaquenil which is an excellent drug for skin trouble and it can up to 6mths to work but it's all down to the person, it started working on me at nearly 3mths....well it's upto the individual but i would'nt recommend it unless you want to trigger a flare or irritation which does happen alot with DLE.
Take no notice of other people looking at you...as you'll always get ignorant people stare it a well known thing, who's suffering you or them..it's all down to pure ignorance. I've had dark brown pigmentation lines on my face besides blisters and had comments and they've had the wip lash of my tongue.
Dunnia- I do have it in my ears, arms, back, & chest, along with my face. I had my eyebrows waxed the other day and because of the way my skin is the pulling actually cut me. I am on a walker already for numerous other diseases too. I have cut my hair and it did seem to stop falling out some but, will just have to wait till medicine starts working.
I never really had a pimple in my whole life then one day 2 years ago I show up with this nasty scab on my chest and it was all down hill from there. The butterfly rash I have is really wierd looking.
Thank you for all the info this has really helped a lot.
Dunnia said:
Hello, I had the butterfly rash in my face really really bad it was kinda embarrasing to me since I always had good skin, everybody always ask me what happen to your face?... Besides the ugly rash it was painful and it itch all day and night, and yes about 75% of my hair come out I had patches on my head so I decided to.cut, my hair to my shoulders and I donated 14inches of my hair to Lacks of love...cancer kids....i also had the rash in my chest, arms, ears, and eyebrows my dr gave dr gave me a.creme to use on my rash and it help...but he end up putting me on prednisone and thats how the rash finally went aways....he say I had a flare up so thats why I had a rash everwhere.....
Thank you for the link. I finally see someone with the same type of rash.
I feel bad for those people but was almost beginning to question the doc about dx.
I have so many other things wrong with me that I do not in any way trust a doc. I have to do the research for myself in order to believe. I know that sounds terrible but when you have been shipped from doc to doc until you have been through 17 or 18 of them to get a dx it is scary and frustrating. Then on top of it all you are on your death bed before they do anything to help you.
Thank you for all your help.
Tez_20 said:
Hello Anissa, I have DLE besides SLE...you can have both together or in time people with DLE will come to have SLE also. I had the butterfly rash years before diagnosis very inflammed red it was from one cheek to the other....you can have it hit you in different shades according to pigmentation of the skin....my hairs not gone brittle just kept falling out so now i keep my head skinned on grade 1 can't see the point in growing it then it dropping back out again plus i've had it mimic ringworm.
I'm attaching a link regarding skin issues with DLE besides pic's
I was on plaquenil which is an excellent drug for skin trouble and it can up to 6mths to work but it's all down to the person, it started working on me at nearly 3mths....well it's upto the individual but i would'nt recommend it unless you want to trigger a flare or irritation which does happen alot with DLE.
Take no notice of other people looking at you...as you'll always get ignorant people stare it a well known thing, who's suffering you or them..it's all down to pure ignorance. I've had dark brown pigmentation lines on my face besides blisters and had comments and they've had the wip lash of my tongue.
Our main concern is helping one another and they're my 2nd family as fare as i'm concerned besides a good many other member's.
Yes the butterfy rash was on there and you only have to Google Butterfly rash and click on images and you'll see all the different types and how they form.
I'm the same as you regarding trust with doctor's but with a couple i do have good relationships and alot of doctor's can diagnose and autoimmune disease by symptoms showing but it just seems like they love the bloods showing positive but that's not always possible regarding Lupus because it fluctuates the bloods and can give off false readings but to be through the amount of specialists you have that's terrible.
Hi there zipperhead, yes the butterfly rash is something !!! when my rash flares , it is itchy , makes my face look very pale , along with the flaking , it's a pain within itself ...LOL Let's not talk about the hair !!! it's like somedays it seems full and healthy and then it looks as if comes out overnite !!! I told my doctor about that , and of course you know what they always say , " It's part of the LUPUS " , yes i do take Plaquenil , i really can't say how long it was before it started to work , all i know is that within about 2-3 weeks i was not feeling the way i was before started taking it !! it helped me to move alot better . And it still helps . People do think that it is contagious until you explain what LUPUS is. But of course who wouldn't ???? I don't wear makeup on my face so i can't answer that -sorry .. Well hope that you feel better and stay strong Livng with LUPUS.... Beverly L.
I use Triamcinolone acetonide cream on my rashes, you can ask your rehumy to prescribe you some…it might work…hope you feel better…good.luck…love Dunnia…
zipperhead said:
Dunnia- I do have it in my ears, arms, back, & chest, along with my face. I had my eyebrows waxed the other day and because of the way my skin is the pulling actually cut me. I am on a walker already for numerous other diseases too. I have cut my hair and it did seem to stop falling out some but, will just have to wait till medicine starts working.
I never really had a pimple in my whole life then one day 2 years ago I show up with this nasty scab on my chest and it was all down hill from there. The butterfly rash I have is really wierd looking.
Thank you for all the info this has really helped a lot.
Dunnia said:
Hello, I had the butterfly rash in my face really really bad it was kinda embarrasing to me since I always had good skin, everybody always ask me what happen to your face?.. Besides the ugly rash it was painful and it itch all day and night, and yes about 75% of my hair come out I had patches on my head so I decided to.cut, my hair to my shoulders and I donated 14inches of my hair to Lacks of love…cancer kids…i also had the rash in my chest, arms, ears, and eyebrows my dr gave dr gave me a.creme to use on my rash and it help…but he end up putting me on prednisone and thats how the rash finally went aways…he say I had a flare up so thats why I had a rash everwhere…