DISCOID AND SYSTEMIC LUPUS AT THE SAME darn TIME

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SURVIVOR37
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 9/7/2012 11:35 AM (GMT -6)   
I was just diagnosed last month with lupus and Sjogren's syndrome. I was started on meds and told to come back in a month. but i never really got a good understanding of which form i have because he said i have both SLE and discoid. is that even possible?

lupie84
New Member


Date Joined Sep 2012
Total Posts : 6
   Posted 9/7/2012 12:30 PM (GMT -6)   
I have both, it is possible. diagnosed 2010.

kookla34
Regular Member


Date Joined Feb 2010
Total Posts : 31
   Posted 9/13/2012 12:44 AM (GMT -6)   
What kind of Doctor did you see? Did you have any kind of rash anywhere? it is NOT easy to be diagnosed. I went to supposedly great dermatologit. He took biopsies of the rash on my both ears. And believe it or not. I had them on my hiney.. ( Sorry for the language.) But its true.. Still after all of that he said I had discoid lupus. I was NOT satisfied with that response/diagnosis. So I kept going back. Hair was fallling out. Joints were swelling. so THEN,,,, ya THEN he decides to take blood work and a uurine test. The next thing I knew he had referred me to the head of Dermatology at the Univerisity of Utah. He diagnosed me just be seeing the tests. and Said it was absolutely Systemic.

All I am sayin to ya is that you have to fight like hell to get answeres but YOU CAN DO IT! Go to a Rhematologist. They will run blood and urine tests to see if the kidneys are involved. So just go for it. Catch it while you can so you can get the proper treatent.

BEST OF LUCK!
Steph
Steph

Diagnosed SLE since 1995, Lupus anticoagulant, Class 4 Kidney disease, depression, seizures & a stroke.

Jujubeee714
Regular Member


Date Joined Jun 2012
Total Posts : 26
   Posted 9/17/2012 6:38 PM (GMT -6)   
I also have both. If this rheumie isn't explaining anything to you it's time for a new one. You should be informed. Yes, you can have both. Absolutely. Your not alone. Love Julie
Here is a link to my rashes

[http://jujuslupus.blogspot.com/p/my-rash-pics.html]

SURVIVOR37
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 12/14/2012 12:53 PM (GMT -6)   
I saw a rheumie dr that told me i have SLE and discoid. I have the butterfly rash and lesions behind my ears and in them, sores in my mouth (ouch they hurt like heck) and i was just told last week i have fibro also. He gives me a lot of reading material but would just like him to explain it sometimes. blood work and the butterfly alarmed my dr that did bloodwork and when i scored 5 out of 11 points sent me to see the rheumie doctor. He told me i had both on the 1st appt. which was surprising to me but he started treating me right away and i see him every 4wks

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 12/14/2012 1:27 PM (GMT -6)   
Sorry that you've got both, Survivor.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

SURVIVOR37
New Member


Date Joined Sep 2012
Total Posts : 5
   Posted 12/14/2012 4:58 PM (GMT -6)   
I cant even lie. i was really depressed and in denial at 1st. because whatever trigger it came down on me like a ton of bricks. but im getting better with dealing with flare ups and changing things in my life. I went to get my nails done today and the nail tech saw my purple ribbon bracelet and we started talking and she has discoid lupus and we talked and she cried and honestly it was nice to actually talk to someone face to face that knows what its like to live with lupus everyday. :) i enjoy this site everyone is nice so far so good!
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