butterfly malar rash??

hey everyone,

i would first like to say thanks to every single one of you for the support you give!!! i don't know what i would do without you guys!!!

second, i need some opinions about the malar butterfly rash. i have seen alot of pics of this rash, some not too bad, and some just terrible. my heart goes out to those with a bad butterfly rash!!!  i have attached some photos of me and was wondering if you think this is a butterfly rash?? its not as noticable as yesterday, but it still there. do you think this is the malar butterfly rash?? if yes or no please explain!!! my doc says it is, but like i said, the pics i have seen of this rash are far worse than mine.

please excuse my appearance, i was not up to doing my make-up, hair, or eyebrows as i'm in the middle of a flare up!!! don't mean to scare anyone, lol!!!

lots of love

jenn

[karajo]

In my opinion it looks like a malar rash (butterfly rash).  But it's the dr. you have to convince and that should be enough.  Do you have the other symptoms of lupus too?

[irishghost]

hello,

oh yes, i have a ton of symptoms to go along with it!!! i've experienced this rash for about 4 years now. the first two years it was kind of here and there, but the last two years, especially this one, i have it constantly. before i ever suspected lupus, i thought the rash was from my sinus problems and thats why my cheeks would get soo red. my family would constantly make commments to me about my red face, and would ask why i had it, but i didn't have an answer at the time. but one day, i went to the doc because i was really really sick, and when i left the doc's office that day i knew there was more to my illness than he could figure out. so i went home and researched all my symptoms and complaints as i was determined to figure out why i was so sick. i felt like my doc wasn't beleiving me, so i wanted to research for ideas of why i was sick. lupus kept comming up over and over again. i also saw other diseases that had my symptoms, but they were either ones that listed symptoms i don't have at all, or they didn't list all of mine. i researched forever, not wanting to beleive i had lupus. then one day, i came across a pic of the malar rash. there was no doubting it, thats what is on my face. i switched docs last year and she is really trying to help me. she had my past medical history file from my old doc, plus my complaints of being sick to her, plus she see's the physical symptoms i have. i just recently had an ana test, but it came back negative again, so she is running the anti-dna and compliment tests now. she told me that she knows i have lupus, but she is working on getting lab evidence so she can send me to a specialist. she told me that i have severe photo sensitivity, and not to go outside if possible. she also put me on a high dose of prednisone which also reacts to the sun,so, i'm not allowed to go outside at all. i can see why too. i went to the grocery store the other day, was in the sun in the car for maybe a total of 15 minutes, when i got home, i was soooo sick. it seems this year that the butterfly rash does not want to go away at all. it fades a little at times, but for the most part its always there. does this mean i will always have it?? or do you only get it if you have a flare??? the other strange thing is my prior blood work came back odd. i had my blood tested 2 weeks apart!! the first patch of lab results looked okay, except for the severe vitamine b-12 deficiency and the vitamine d deficency. my last results where the same except now.....my hemoglobin is low, i have bad anemia, and my urine has protein in it. my platelets were okay. i'm now waiting for my new labs to come back to see if it shows lupus. i have been very sick for along time, and i'm tired of it. i know that i will never be fully healthy, but something has to get better. i've had to give up alot of things i liked to do because of my horrible lower back (i have 4 herniated discs), as i used to be a very active person. i'm very limited because of the back, the migrains, the severe fatigue, and the chronic sinuse problems if have. i do the best i can to function, but now, the last thing i loved has been taken away. i love the sun, i love to swim with my kids, and now i can't. i asked my doc if i could go outside if i wore the best sunscreen possible, covered up with clothing, wore a big hat, and sat in the shade.....she said no!!! she said my photosensitivity is so bad, that i have to avoid the sun at all costs. she said she is afraid of me going into organ failure or something, as she told me that i am a very sick woman right now. i just hope that when i do get the meds i need for this disease that things will change and i can outside again. as of right now, my doc is doing the labs, she is sending me for a sleep study/eeg for the seizures, and is sending me to a neurologists. the seizures i'm having are becomming more and more frequent. i recorded myself at night to have proof that this was happening to me, seemed like all the docs were in awe over my complaints. the one night i recorded, bammmm, i had a siezure and i didn't even lay down fully on the bed yet. i showed her the tape and she is very concerned. i even went back through all my pictures i have to see when the butterfly rash first appeared. that was back in like 2005, but i was not sick like this at that time. over the years i have developed more and more symptoms.

my symptoms include:

seizures
anemia
malar rash
protein in urine
photosensitivity (severe)
mouth sores on the inside of my cheeks
nose sores
severe muscles and joint pain with swelling, redness, and warm to the touch
chronic headaches
severe fatigue
severe chronic sinuses
nausea and vomiting
i have lost a total of 90lbs and its unexplained
vertigo
blurred vision
dizziness
tunnel vision
problems with my white cell count
a positive test for autoimmune activity but a negative ana
chest pain, especially when taking a deep breath
anxiety
depression
insomnia
fevers of 100-103 degrees everyday on and off
hair loss, thinning hair not patches
swollen glands and lymph nodes in neck
thyroid test results are very strange, one part comes back high and the other is low
raynauds phenomenon, or at least thats what the doc thinks
chronic diarrhea

there are more symptoms, but just too many to list. ms has been ruled out too. my doc has not officially dx me with lupus, as she wants to try to get labs for more evidence for future docs i will have to go to. so at least the long battle i have been going through of getting a doc to listen is actually paying off. my family doc told me i have lupus in her opinion and i agree, so at least half the battle if won. i just want to move on with life and be a great mother again, not a sick one all the time. i'm coping with this disease, and if i didn't have you and this forum, i dont' know what i would do. all of you people on here have been great. its sooo nice to have someone to talk to that can relate!! my hubby is very supportive, but he will never understand how i feel. the rest of the family, meaning my mother and sisters, are in denial. its not that they are mean about it or anything, but they constantly say things like: are you sure your hair is thinning? why are you so sensitive to the sun this year, you were not like that last year!! maybe your just suffering from depression!? they just don't understand how i feel, but i think maybe they are grasping the severity of the situation a little. when i do get the dx from my family doc, i'm making my family come to the appt. so the doc can explain to them about this disease. maybe she can get through to them, or maybe i'm not explaining it right.

thanks so much for being there for me, and listening to me vent!!! if you ever need anything, let me know!! have a great day and God bless you!!

jenn

[sk8flo]

I am so sorry to hear of your ongoing illness - you have come to the right place.  Please don't let your doctor wait for a positive ANA - there is such a thing as negative ANA lupus.  You have some serious issues and should be under the care of a rheumotologist ASAP.  I don't say this to scare you, but it can take months to get an appt. with a rheumy.  The Lupus Foundation is a great resouce for recommendations - not all rheumys are well versed in Lupus.  But they also know the proper tests to run and will send the blood to qualified labs as needed.  Not all local labs are of the same quality!!

I congratulate you on taking a photo and recording your seizures.  They can't argue with that!!!

In the meantime, has she started you on any medication???  How soon is your appt. with the neurologist?  He may be able to get you into a rheumy quicker.

Keep us posted.  Glad to see you are getting yourself educated!

[karajo]

sk8flo is right. There are 11 criteria of lupus. You must have at least 4 of the 11 to recieve a dx.

They are:

1. malar rash over cheeks (butterfly rash)

2. discoid rash, red raised patches

3. photosensitivity - reaction to sunlight, resulting in skin rash

4. oral and nose ulcers

5. arthritis

6. serositis - inflamation (inflammation) of the lining of the lung or heart

7. reanl disorder - excessive protein in urine and/or cellular casts

8. neurologic disorder - seizures, or psychosis

9. anemia or low white blood count or lymphopenia or low platelet count

10. positive ANA

11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Youa actually have 5 of the 11.

#1, 3, 4, 5, 7(?) & 8

Most people either have an elevated ANA or it becomes elevated eventually. My ANA was low and worked up, but I was still getting the run around...even from rhematologist. Then I read that being in the sun can cause the ANA to spike. When I spent time in the sun prior to the last ANA I had, it spiked up to 2,560. That is what I needed for the dr. to take notice.

Hope this helps

Praying for you, as I personally know what you are going through.

[irishghost]

hello,

i also just developed anemia, found out at my last appt. ugh...lets see what else happens next!!

god bless

jenn