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Posted 1/8/2008 3:29 PM (GMT 0)
Hi. My cheeks are very pink, not really a rash but they always very pink/red. I was at the eye doctor trying out glasses and my face was really hot. By the time I finished trying out glasses, my face was very hot and red. I was under flaurecent lighting all that time. After I left the office, my face was not burning anymore and redness went away. Very weird. Anybody expeirence anything like this?

 

Posted 1/8/2008 5:48 PM (GMT 0)
I have. Are you taking prednisone? I tend to flush alot on the prednisone. Judy
Posted 1/8/2008 9:08 PM (GMT 0)
Judy, I am not taking anything at this time, because I do not have a dx yet. Have you been dx'd with Lupus?
Posted 1/9/2008 12:41 AM (GMT 0)
KaAl . . . that's where my name stems from . . . my cheeks are Always Rosie !!! LOL Yes . . many of us have malar rash. Most of us have it come and go. Mine is apparent all the time, but brightens when I'm about to flare or in a flare or have done too much. I also develop a rash on back of hands and v of neck, tops of feet, back of knees, with sun exposure. Sometimes it takes as little as a walk down the driveway to my mailbox. Yes . . . you can have a reaction from fluorescent lighting and many of us have had to change jobs because of it. Most of us are very sun sensitive and we warn new members to limit sun exposure and cover up. I wear a long sleeve man shirt any time I go in the car or outside - to cover right down and over my hands. I also wear a wide brimmed hat and carry an umbrella when needed. I cover even my car - as I've had much trouble even through the car windows. Do be careful when the sunny days come back around. The reaction is not always immediate. So be careful. I hope this helps. Blessings!
Posted 1/9/2008 12:54 AM (GMT 0)
KaAl, I have been diagnosed. It took a while. I think that's the rule rather than the exception. I was however under treatmet for many years prior to my diagnosis because I had kidney disease. It just took them a while to figure out that it was secondary to Lupus. Where are you at right now? Are you being tested? Seeing a doc? Judy
Posted 1/9/2008 1:22 AM (GMT 0)
Oh, I see...always rosie. LOL I thought you meant that your name is rosie and that you will always be rosie, LOL. I don't have a malar rash, my cheeks just are very pink a lot of the time. I look like a healthy young chick...look is the key word nono so not so. I get these weird hot spots on my body, very pink and hot circular spots that come and go quickly, maybe 10 minutes or so.

MJLD: I was seeing a rheumy (waiting for my appointment with second rheumy) I had a positive ANA at 1:160 and elevated esr at 26, re-tested a month later and ANA was negative and esr went up tp 38?!! Confusing to say the least!

 

Posted 1/9/2008 4:32 AM (GMT 0)
KaAl, I have lupus with kidney, heart and cns involvement and have never ever had a postive ana. So, I know what ya mean. My ESR, CRP and RA factor are always elevated. Hang in there! judy
Posted 1/9/2008 2:35 PM (GMT 0)
Judy: if you don't mind, can you tell me a little bit about how Lupus has affected your CNS (this is my main complaint)? How do you feal during a flare? What type of symptoms do you get?

Later!
Posted 1/9/2008 5:28 PM (GMT 0)
Hey KaAi,

I can relate to the hot skin but I tend to get it all over my body, it really stinks. If I am out in the sun, and get it all over, I get creases where my clothes were hitting me, etc. I burn, itch, swell, and hot to the touch, but no fever. I hold a ton of water in but my kidneys are fine, I just show as a big allergy.

I do not know if you have Sjogren's Syndrome, but if you do and carry the Ro/SSA antibody, than you are prone to eventually be very sun-sensitive.

Hope you find relief. I found that taking activated charcoal tends to help the hives and stuff subside for a while anyway.

Leta
Posted 1/9/2008 10:16 PM (GMT 0)
KaAl, What I was actually diagnosed with is lupus cerebritis. I had visual disturbances, (flashes/burst of light, blind spots) difficulty speaking, memory/concentration problems, severe depression/mood swings, numbness face/extremeties, my limbs would "jump" involuntarily. They were actually able to isolate a certain protein/cytokine (alpha 1 beta2 immunoglobulin A) that I have that can be a causative factor. Judy
Posted 1/10/2008 7:00 PM (GMT 0)
Judy, How were you diagnosed with lupus cerebritis? Is it a blood test or brain mri? Does your lupus affect your organs?
Posted 1/10/2008 7:02 PM (GMT 0)
O.K, duh, you did mention that you had kidney disease.
Posted 1/10/2008 10:26 PM (GMT 0)
Hi all!

I just put sunscreen on now along with my morning mositure cream.  I have completely natural stuff I use for mositure cream and then I add in the sunscreen...flourescent lights have always set me off.  The sunscreen seems to help.  I too am starting to see a slight result from the plaquenil yeah

Blessings!

Posted 1/11/2008 1:36 AM (GMT 0)
Great news Be!!! Every little step forward is a bonus!! Now only increase your activity VERY gradually (and only if tolerated) or you could slip back into a flare. Blessings!
Posted 1/11/2008 1:39 AM (GMT 0)
My wonderful/awesome nephrologist (who also treats my lupus) actually consulted with Dr. Daniel Wallace who wrote The Lupus Book about my case. I had a spinal tap, and ct of the brain with contrast. They really like to do an MRI, but I have a pacemaker so I can't have MRI's. I also had a battery of blood work. Cerebritis does not always show up on MRI's. It can be very hard to diagnose. They did isolate a protein in my blood that can be indicative of it (Alpha 1, beta 2 glycoprotein immunoglobulin A). One of the major problems I had was very disjointed/disorganized thoughts. Alot of trouble expressing myself. I became paranoid. I tend to be a level headed/rational person and I became the complete opposite. I had "automatism" where I would kind of go about my daily task with an "empty stare" and just operate on auto pilot; but then not really remember what I had done/said. My family became extremely worried. I got severely depressed. It did respond amazingly quick to high doses of steroids. I can't really put into words the profound efffect it has had on my life. I wish I could. If anyone has these symptoms it is imperative to get help. If you have any more questions i'll be glad to answer. I hope this made sense. I'm still struggling with concentration. Judy
Posted 1/11/2008 11:19 PM (GMT 0)
Oh Judy, you are so fortunate to have such a great doctor that can figure out what is 'wrong' with, and get you the help you need...still searching here sad

So basically what you are saying is that this  Alpha 1, beta 2 glycoprotein immunoglobulin A, that showed up in your blood dx'd Lupus?

Sorry for dragging this, I hope you don't mind :-)

I wonder if Dr. Wallace is still practicing and where is located? I think I'll also start a different thread on that one!

Posted 1/12/2008 12:25 AM (GMT 0)
KaAl, The alpha 1, beta2 did not diagnose the lupus. But it did show up in my bloodwork after the cerebritis and apparently has some connection. I really hope i'm not confusing you. I wish you could come to Mississippi and see my awesome doctor! She's a nephrologist so she only sees you if you have kidney involvement. I really believe God sent her to me. I know if you keep on you'll find the right person who will listen and get to the bottom of your issues. Hang in there. I really don't mind answering as many questions as I can. I guess I just feel inadequate. I hope I can help and not further confuse. God Bless you, Judy

I really think Dr. Wallace is in New York but i'll check for sure with my doc on Wednesday
Posted 1/12/2008 4:42 PM (GMT 0)
Thanks Judy. I know that you are just trying to help. Don't worry about confusing me, I'm already confused.=)
Your doctor really sounds great, for her to call up another doctor for 'help', just shows you that she cares about her patients. I admire that!

Thank you for asking your doc for me.
Take care
Posted 1/12/2008 6:59 PM (GMT 0)
I wish everyone of you had a doctor just like her. She has become a really good friend. I have her home and cell number; can call her anytime. She actually bought me the Lupus Book and a subscription to a lupus mag. She really cares. I thank God for her everyday. Judy
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