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Does Anyone in this group have the discoid lupus?
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tupper99 posted:
I want to know persons that have this type of lupus and what your symptoms are. I suffer from a rash over all of my limbs, trunk, neck and my hair is falling out. I am female, so this is a vanity issue with me.
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lisaisweavebee responded:
Hi Tupper99!

Just wanted to say "welcome to the group" and while I don't have the discoid issues, I believe there are a few here who do. Hopefully, one of them will answer your post soon. I have lost a lot of hair so I know how you feel with the whole vanity issue.

Hope you feel better soon,

Lisa
 
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DontWorryBHappy responded:
Hi Tupper99,

I have discoid lupus and I am a 25 year old female. I was diagnosed in October 2010 and have had a very hard time coping with my scarring hair loss on my scalp ever since. It is currently spreading and flaring. I only have lesions on my scalp, widespread. I have been to a rheumatologist and his tests show no other signs of SLE. fingers crossed. This is hard enough to deal with so far. I try to stay positive though, and think how much worse it could be. Not to say I don't look in the mirror and cry at times. I just bought a nice Nike hat to wear outdoors at all times. Minimizing sun exposure is key. I hope you are doing Ok?
 
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tupper99 replied to DontWorryBHappy's response:
I am glad u are dealing with the ramifications. I finally bought myself a wig and no one has questioned whether it is my hair or not! They say I look 10 years younger! That always makes a girl feel good. I have this itchy rash all over my body and I want to stop itching! I have been given atarax and a cream that does not help. Any one out there getting better treatment?
 
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markdilo2000 responded:
I am a 37 year old male who was diagnosed with discoid Lupus a little over a year ago but have had the symptoms for a very long time. I usually get the rash on my arms and sometimes my neck and forehead but that is rare.Right now I am having a extremely bad breakout on my feet which I never had before. I am trying to find a dermatologist in my area that specializes in discoid Lupus but I'm not having any luck.
 
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lisatru62 responded:
For me it started as Discoid Lupus and turned into SLE after years of doctors ignoring my symptoms. Before medication I got rashes on my arms and legs but I also developed cysts on my legs, and chest. Had to have a few removed because they kept growing and sometimes hurts.

The medication has helped but I do have a lot of scarring on my scalp and my hair is much thinner. The hair loss has slowed with the meds but it hasn't stopped entirely which is disconcerting.

I don't know if there is anyway to stop this condition and many people have the same problem. Do have to agree that the sun is our enemy even with sunscreen. Try not to stress as it makes things worse.

Good luck
Lisatru62


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