James’ Story
I’m a 32-year-old black male. I was diagnosed with Systemic Lupus Erythematosus 11 years ago.
Now in 2004, I went to the dermatologist, after noticing white lesions, and my hand would hurt.
The dermatologist told me that I had Raynaud's Disease, he gave me some creams and sent me home.
As the lesions began to develop, I started getting ulcers, so I went for a second opinion and a biopsy was done. That led to an infection where I almost lost my hand.
Come to find out it was Degos disease.
I was told about one case for the nicotine patches, so I’ve been using them. Now I get rashes from every use.
Right now I'm taking Prednisone and was on Cellcept. I take Oxycodone and Oxycontin for pain, and for sleepless nights I take Ambien.
The past couple days, I’ve been getting more ulcers and more pain. I don’t know if Aspirin or anything else works, please let me know. Wish you all luck.
I’m here for anyone who needs to talk.
James
Update: December 2008
Well here I am, two years later people ask me how I’m doing now.
I woke up this morning, is that a bad thing or a good thing?
Well, I’ve been getting new lesions, mainly the feet and legs, on my ears, along with my chest, etc.
I’ve spent most of my summer in hospitals. Pain hasn’t been too bad.
I videoed myself and took pictures.
I have sores everywhere, although the ones that hurt are my hands and feet where most of the pain relies.
The sores are mainly dealt with by letting them dry out then wash them off everyday in the shower, somewhat like wet to dry.
I’ve been using cocoa butter mixed with shae butter and vaseline–it's expensive but works really well. It can be bought at CVS for 10 dollars a jar but does its job well. I’m tired of typing… I have pics and videos, if you’d like to see them let me know.
James