do i understand this correctly, those with sle can have the butterfly rash ? seems i am developing that, i have always had rashes on my hands that turned dark yellow but it seems that my face is getting a raised type rash on it, not acne, just spots and looks a little rough, covering both checks but nose is not as bad, just a spot or two here and there on my nose. I think i also told you i had a rash under my eye that turned black so i look like a one-eyed raccoon. remember that i have a borderline lupus diagnosis and that i am not being treated and i am just really sick i go to the doctor in june - i made pics of myself maybe that will help-please let me know what you think
It is very common for people with SLE to have the butterfly rash I get it all the time… It’s one of the main symptoms along with fatigue and joint pains 
hope this helped
so they come n go right
cayleigh said:
It is very common for people with SLE to have the butterfly rash I get it all the time... It's one of the main symptoms along with fatigue and joint pains :) :) hope this helped
I was diagnosed with lupus about 15 years ago. The one thing tricky about lupus is that it gives different symptoms to different people.In order to be diagnosed there is a certain criteria that has to be met. Please read the following http://www.lupusresearchinstitute.org/lupus-facts/lupus-diagnosis. I have never had the butterfly rash on my face as some lupus patients describe When I was first diagnosed there wasn't a book to be found and hardly any information to be found about the disease. I still don't think surgeons and some doctors even have a grasp on how lupus can effect a person's body. Lupus patents call our bad times "our flare times". Most all of have the joint pain and fatigue in common.
I sure hope you find someone who can help you. Hope you are seeing a rheumatologist because they specialize in lupus.
Take good care,
I agree with Aunt Pearl. I do haver the butterfly rash, but it comes and goes. My docs believe I have had lupus for over 20 years, but have been mis-diagnosed for a very long time. Finally found a rheumy close enough to take care of my meds etc.... I still see my PCP for a lot of things though. She is great and lots closer for me. Plus she doesnt add more Dx like my rheumy does :) so far, SLE, Sjogrens and Reynauds... I told the rheumy I was going to stop coming to see him if he didn't knock it off. Seriously though Kel, you need a good rheumy to help Dx you and take care of your medical needs. Good luck!
Ues I agree with the doctors knowledge. I also was thinking about the sun. I have been having a terrible time this year with the sun. Even with facial cream with spf. Also, it could be severe allergies giving you the black eye. It could also be a combination of all this. I have had the ash maybe 5 times in almost 19 years but that sun is swelling up my face and making it red, even for just a few minutes.
always take pictures. I've made that mistake. I have sle but I don't have any rash on my face, just my extremeties. I had biopsys on my legs and that clinched my dagnosis, Keep looking for answers
freightliner
oh yes, the sun just does me in
Ann A. said:
Are you being very careful to protect yourself from the sun and other sources of UV?
yes, i do have a rheumy and i have made picks, i had a rash under my eye that has turned black, lovely looking and i have the rash and i took pics, i see her again the 18th of this month and my mouth is so dry i cant swollow, it is driving me insane
freightliner said:
always take pictures. I've made that mistake. I have sle but I don't have any rash on my face, just my extremeties. I had biopsys on my legs and that clinched my dagnosis, Keep looking for answers
freightliner
i do have a rheumy i see her the 18th, have butterfly rash now and black eyes, also my mouth is so dry i can hardly swallow, i took pics in case it changed between now and then, i am going to float away if i drink anything else
I have the butterfly rash - it goes across my nose, into my nose and nose folds, across my cheeks. Then it is also between my eyes and in my eyebrows. I've also noticed some of it on my hair line. The best thing I can do for it is keep my face clean and use 30 spf moisturizer. I find that when I flare, hydro-cortisone salve helps a lot. I am currently in a huge flair - why? cause I decided I didn't have a sensitivity to the sun on Thursday. It was finally sunny here and I went with a friend to get flowers - two hours in direct sun with no protection...then another two hours in her yard. I don't know how I thought I wouldn't be affected, but for one day, I wanted to just be normal. Today I can hardly walk, pain is everywhere, terrible headache and broken out in the rash all over my face. So much for normal.
Hello Kel!,well am going to share a story with you, (hope that this won’t be a very long story to read-L.O.L), 3months after being diagniosed my face , would burn and itch soooooo bad every time I would go outside ,mainly in the sun. I was so scared at times when I had to leave the house, I was putting things off until another day or when there was an overcast . Then the little bumps would pop up , they would only stay for maybe one or two days but the burning would always be there even if the bumps weren’t. So on one visit to the doctor, the rash had came out so bad (days before the visit), the doctor was like what happened to your face? Explaining to him what was going on since the last visit with him, he took me to the dem doctor two floors down from his office, while both of them looking at my face , they both came up with it is the Lupus rash, AKA -The Butterfly Rash of SLE. Of course at this time my nerves were jumping all over the place, I did not know what to think. They called my son into the room, explained to us , that for a couple of days I should not go outside in the daytime!! Wow little did they know I was scared of going out, that was something that the didn’t know (i didn’t tell them , I was already doing that), anyway my son says what else do my mom have to do for this? Well being straight forward with them, he said “will this keep coming on her face like this?” guess what they said ? Yes, and it will get worse!! I started to cry very bad . My son took my hand and said it will be okay mom. Well , am not a beauty queen or anything but hay who want people starring at you like some freak? The doctors said “but we can give you a shampoo to wash with everyday”. So for a moment everyone was quite, then the crying from me started again!! Why? Me I said , is it not enough that people that be around me have to help me do things all the time , and now they have to look at me like what in the world is wrong with your face and asking questions that I didn’t want to answer! So we left the office and went back upstairs , talked wit my doctor for about 20 more mins., and left. Me and my son got the shampoo, I got home washed me whole body from head to toe like they said to do for the first time ,then the next day wash my face once a day with the shampoo. Am still using it and it will be 3years, Feb. 7 ,2014. Sometimes I wish this Lupus stuff would take a break for at least a week and let me be or feel like a normal person, but since that is not part of the plan, I just do what has to be don, keep it moving to the best of my ability!! Back in June of 2012 , my aunt told me about Biotin and cortizone for exceam (probably misspelled), so I looked up biotin , found out what it does for the body , and knowing people who have exceam, I asked questions and found the cream at Walmart and the biotin , got some pure Vaseline, and all 4,are a daily mix for my face still to this day!!! Went back to the doctor for the next check up, he asked me how was the shampoo was working for my face I told him just look at the rash now!! It was almost gone!! Then I told him about the other products that I started using and he says. Wow really ! But being the doctor , he says Please don’t use the cortizone everyday. Well I said to him this is not your face and you don’t have to have people starring at you. I was not trying to sound mean or anything but hay! It is my face. His reply was cortizone make the face tissues strink. And of course I told him , I have been taking vitamin E for a very long time and I know that it help the skin stay healthy so now it is at a count of 5 products that I use daily. And have enjoyed being outside daily , from then til now, there is no Butterfly rash anymore and my doctor take pictures every so often, just to add to my records. He said that I could be a doctor , no that’s not what I want to do, am afraid of needles-LOL!!! But that ends the story and hope that you find some comfort in this, and relief soon! Don’t just take what they , the doctor say to you, you have find out what work for your body, get information, don’t settle for their theory to be the last word!!! Take care …Beverly L.