I was diagnosed with Epidermal Lupus in 2006, Sjogren's Syndrome in 2008. I learned this week that my sed rate confirmed that my Lupus is also Systemic.
Is anyone else taking Quinine for treatment? I am to take 200 mg twice a day. I will have to see my ophthamologist every 3 months to check for macular degeneration, and regular bloodwork to monitor kidney function.
Does anyone have poly-neuropathy with their Lupus or prone to tumors? I have had a parotid tumor, brain tumor and thyroid tumors. I've had a partial colonectomy from ischemic bowel attributed to ulcerative diverticuli. My GI diagnosis is IBD/IBS combined. They think though that the tumors would be more due to Sjogrens. Pleuresy with lung scarring to Lupus.
The way that I was told is that Lupus is the hub and that the Epidermal Lupus and Sjogrens (connective tissue disorder) are satillites of the Systemic Lupus.
I know the things that we can foresee with auto-immune disease/disorders. But, am in the dark as to course of treatments and effectiveness. I shudder to think of steroid therapy beyond what I have had to have to date. When I've gotten desperate, I have asked for a steroid shot for the joint pain.
I just lost a tooth from steroid and radiation therapies when i had the brain tumor.. So, the less steroids the better from my aspect.
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