Question about the butterfly rash

Hello everyone! I snuck over here from the MS forum...I am one of those poor schmucks stuck in limbo without a diagnosis.This may be a silly question, but is it possible to have the malar rash show up without sun exposure? I wrote off Lupus a long time ago because my symptoms did not quite match up, but now I'm starting to wonder. It started as a disappearing/reappearing oval shaped red spot on one cheek near my nose sometime last year, but I couldn't tie it to anything specific (like heat, exercise, cold, etc.) It would just randomly show up, stay for awhile and then disappear. A few weeks ago it materialized again, but instead of being on one cheek it was on both cheeks and my nose. It stayed for an hour or two, then disappeared. It has come back several times since then and stayed up to 10+ hours. I thought it looked familiar and googled facial rashes; the only ones that came close were rosacea and lupus (and it is definitely not rosacea). I did grow a brain cell and get some pictures for my Rheumatologist, although it doesn't show up too well *laugh*.  
Background:
I am now 45; climbed on the medical merry-go-round at 40 with breast cancer and can't seem to get off. Dermatomyositis at 42 and was diagnosed with Fibro in December (oh joy ;o) Anyway, I started again in 2009 with yet another mystery illness. *sigh* Started with my stomach, then just seemed to bounce around my system like a ping pong ball. Weird rashes on my legs, hair loss, headaches that lasted for days, feeling of flu, muscle pain and weakness; couple times my legs just folded up and quit, a whacked internal thermostat, sudden thundering heartbeat and all kinds of bizarre neurological hiccups. Myositis is in remission, as is the cancer.
My Neuro initially suspected MS (lots of short circuits and blown fuses neurologically speaking) but he could not find anything to confirm it other than a ton of symptoms. I made 3 trips to Mayo last year and my MRI, spinal, Lyme, ANA, etc. were all negative (and is there anything more disheartening than, "Everything looks just great, aren't you glad?" Um, NO). *laugh* The Bicardium SE (?) was high and something called A2 Glob was also high. Lyme was crossed off the list, as was Lupus and about a gazillion other "syndromes". They said that it probably was not MS, but would not formally cross it off the list (due to too many neurological symptoms). They did add the livedo rash to the list (not from vasculitis), and a trashed vegas nerve (stomach).
Okay, this is very long (I'm so sorry!) right now I seem to have some kind of sinus thing, (got a steroid shot Tuesday, felt better for a few days but now I feel terrible) and my blood pressure is 135/86 (it was already running high for the past several months at 120/80), my resting pulse shot up to 120 this afternoon, my muscles feel like I have charlie horses in all of them, chest feels like an elephant is parked on it and it hurts to take a deep breath. Hips and knees are killing me and I have a sore spot on my back (right side middle) that feels suspiciously like a kidney issue. Absolutely freezing with chills and everything, but no fever. Sheesh. Could this possibly be a flare? I am going to call my Rheumatologist monday and ask him if we can readdress the Lupus issue. I went and sat in the sun for a bit this afternoon trying to see if the rash would show up; it didn't, but lots of other stuff sure went kaflooey.
Please don't feel obligated to address all this - I'm really most curious about the butterfly rash part (mine is a dead ringer for it, but I can get past the photosensitivity issue). Thank you so very much!

- Jen

[KHoefel09]

Hi. I am 22 and have Lupus. The rash is not only caused by sun exposure. I walked two blocks in the cold last week and woke up with my face on fire the next day... Every symptom you listed, I deal with. My mother also has MS. GL!

[geminigirl1963]

Yes, you can most definitely get the butterfly rash (and other lupus related rashes) without sun exposure.  Some of the rashes will get worse with sun exposure and others just show up when and where they want to (tricky little devils!)

I would definitely check in with your Rheumy and see about getting another lupus test done.  I would suggest that whenever you DO go for it, that you do expose yourself to sun for a while before the appointment.  It may not cause the rash to appear, but as you found out tonight, it could make other symptoms (including a positive blood reading) to appear.  Even if it's cold outside, stay out in the sun for at least an hour before your appointment if at all possible.

Best of luck and please keep us posted.

[JenEpicFarms]

Thank you so much for your answer; the rash did finally show up last night. The right side is usually quite a bit darker than my nose and the left side, but the shape is the same and fairly consistent. When I was Googling the rash last week, I found a site the other day that indicated SLE can attack the CNS (big Uh-oh for me). Thanks again! :o)

[JenEpicFarms]

Thanks for answering! I think one of the things that threw me initially was that in addition to photosensitivity, the rashes I saw were pretty extreme. Mine just looks like a bad makeup job with the blush in the wrong place. I read about parking yourself in the sun prior to testing, although I'm not quite sure I can pull that one off (I don't get home until 4 and it's dark here by 5). Maybe I can just sit in the hospital parking lot for 30 minutes :o)

How does the photosensitivity thing work? Do you have to completely avoid the sun? That would be my idea of a total nightmare (we have horses, so I'm always outside). I'm going to try to give my Rheum a call tomorrow; he is very good about his patients (he has called me himself before and even opened his office for me on Christmas Eve; that's when I was officially diagnosed with the Dermatomyositis).

Maybe this time something will show up; I sure do get tired of everyone telling me everything "looks great" (*rolls eyes*). Thank you for your help!

[JenEpicFarms]

I think I forgot this part: an MRI showed arthritis in my spinal cord, and some kind of turbo-charged CT I had at Mayo revealed arthritis in both hips (do I remember reading that "arthur" was also linked to SLE?)

Are we having fun yet?? Wheeee :oP

[Weakandfalling]

Hi, Jen!

I'm also over here from the MS forums, desperately seeking an answer.  Like you, I always hated hearing:  "Great news!  Everything is normal!  Aren't you glad?"
Like you, I went to Mayo with nothing to show for  it:  Yipes - you there went 3 times?  Must be a real glutton for punishment.  You know the MS Forum slogan, "Hold the Mayo!"  I agree with that!

Anyway, lets get serious:  I held my cursor over your name in blue and cracked up.  Come on now, you're from Bumblefart????  Has to be fictitious - right?  Anyway I had a good laugh over that one!

Suggestion:  You could get your UVB rays in a tanning salon like I'm doing but be very careful - don't overdo like I think I did at only 8 minutes in the cooker!  Make sure its UVB and not just UVA rays.  The UVB rays have made a real difference in test results for many people who were then finally able to be diagnosed with lupus.  I know those rays have caused a rash on my face!  

Good luck to you.  

WAF

[JenEpicFarms]

Hey, I remember you! How funny - didn't I read someplace that Lupus is called "the Great Imitator"? MS being one of the things it imitates. My Rheumatologist ordered a bunch of testing, ANA being among them (of course we've had NO sun for the past 7 days and I didn't even think about the tanning bed). We'll see what happens.
I took a bunch of pictures of the rash(es) - felt like an idiot, but at least it was "proof" - and gave them to my doc. He added a Raynaud's diagnosis (which I already knew, but he made it official). That one's kind of an idiot-friendly disease.
We had some sun yesterday, so (being a desperate moron *grin*) I went outside. My face has stayed pink since, so we'll see. More pictures anyway. I go for a heart test tomorrow; have had lots of trouble with the ticker thundering away like someone scared me half to death (of course the perpetual question is; will anything show up?)
Glad you got a giggle out of my fictitious hometown. That's what it was "thar" for  ;o)
- Jen

[Weakandfalling]

You too?  I woke up with a very scary 20-beat-run of what might be V-tach. Just 20 nonstop single beats - scary!  It was the morning after my tanning session.  

Hope something shows up for you at your cardiologist's office!!

You're a stitch!!

WAF  

[JenEpicFarms]

It is very scary...caught mine on the BP monitor the other day (left over from when my grandmother lived with us ;o) Resting pulse was 120 - yeehaw (not).
Wanna hear something REALLY weird? It happened the other day when I was outside with the horses putting out hay. Would you believe it spooked them all? They scattered and shot away from me like I had screamed suddenly or something (which, I suppose I did, cardiovascularly speaking that is :o) Took me a few minutes to figure out what scared them like that. Of course the fact that they were all looking at me wild eyed helped considerably *grin*.

[mywhiteangelcat]

You sound like me, they tell me the same thing, I am so tired of that because I hurt everywhere.

[JenEpicFarms]

Have you been checked for Fibromyalgia? I was diagnosed with that in December (and it will definitely make you hurt everywhere!) I've been taking D-Ribose and Co-Q10 for that. I tried Cymbalta, but it made me so sluggish I could barely tie my shoes (and that was SO not happening :o)  I was diagnosed with Raynaud's last week, and my Rhuematologist is re-running Lupus testing because of the possible malar rash.
It is extremely frustrating to have a system gone haywire with no discernible cause. *sigh* The closest I got was one of the Mayo doctors (the MS one) who said she suspected an underlying auto-immune condition but couldn't pinpoint anything specific. She did not think it was MS, but wouldn't take it off the table either as I had too many symptoms.
I hope you get an answer soon!