my undiagnosed lupus

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New Member

Date Joined Apr 2013
Total Posts : 2
   Posted 4/25/2013 8:13 AM (GMT -6)   
hi there everybody,
my name is tami and i am 36. i am here for the same reasone we all are. it all begun 3 years ago, i was under a lot of pressure, and started feeling the blood floowing, burning of my hands palms and legs, stretching of the skin under the burning places, after that came the vomiting, diarrhea, fatiuge, dipression. when tested seen anemia, low white blood cell, positive ana. doctors  presisted it aint autoimmune, eventhough they have and had all the signs infront of them. all along, my skin became thinner, less flexible, its started from the face and hand palms, got to the face, and lately all the places that burnt has no fatty layer under them. next week i am supposed to go back to the only rhummy who suspected its lupus 3 months ago, and maybe finally get diagnosed. just so u'd know, only in such a smaal country like israel it could happen, considering the small population, u can only giess how many lupus there are outside ther, not to speak panniculitis/profund lupus. thus, i will be very gratefull for any information, as from how to keep the disease low profiled, which remedy best recommended, and if can what should i expect, cause every day i am afraid to wake up and not recognise myself? does it stop with the medication?
thanks a lot, me

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 4/25/2013 5:50 PM (GMT -6)   
The medicine can calm it down and help you some. It can't cure it.

These are the meds usually used to help:

It also helps to use lots of sunscreen and sun protective fabrics. Avoid the sun during the high time "11am-4pm". Stay away from fluorescent lights and halogen lights. Wear hats and head covers and use a umbrella.
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! :))

New Member

Date Joined Apr 2013
Total Posts : 2
   Posted 4/26/2013 10:45 AM (GMT -6)   
Thanks a lot for your reply.. Still interested knowing if anyone in the forum has paniculitis/ profundus lupus, to get information about the meds helped him, and to get information about the skin situation.. How bad can it get, when already lost fatty lyre?


Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 4/27/2013 12:47 AM (GMT -6)   

We have had a few folks with lupus paniculitis post here on the forum, but I've not seen them in a long time.

You could do a search on the site and it should pull up their posts. Most of the folks here deal with their lupus being more internal, organ, joint related. There are some who have MCTD and UCTD which have crossover skin issues.

I hope you can find some past posts to help. Maybe someone will come along and see your post.

Take care,
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