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Does anyone have Tumid Lupus?

Autoimmune Diseases | Last Active: May 29, 2023 | Replies (13)

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@kaydee01 Welcome to Mayo Ciinic Connect! It's concerning,no doubt, to have this mottling issue.

What I have found with Systemic Lupus, is what many have said, that it is indeed a "constellation" disorder. That is, what some experience as symptoms, may never occur for others. Back in 1988, when I was diagnosed, there was a long drawn out testing period. The results of each test determined what the next step would be. I never did take any medication. For years, they concluded the excessive protein in my urine was a result of the lupus. Only in late 2014, did my nephrologist determine that he thought there was something else going on. I'll always be grateful to him for looking outside that box they had placed me in! The diagnosis of an ultra-rare kidney disease took everyone by surprise!

I experience the mottling issue you speak of, along with joint pain, fatigue, and extreme sensitivity to UV light. But I also have other health issues that also include those symptoms, so it is very difficult to pin them on anything specific.

Please let me know what the skin biopsies show. And, soldier on! Make each day count, eat healthy, exercise moderately, practice stress-reducing activities.

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Replies to "@kaydee01 Welcome to Mayo Ciinic Connect! It's concerning,no doubt, to have this mottling issue. What I..."

Thanks so much for replying. I couldn’t see much from anyone with the mottling. It’s good to know others experience it. I, too, have issues with the sun. If I sit out in the sun for any length of time, I get a severe rash that looks like a heat rash. This has been ongoing for 20 years. I also had Alopecia Areata for a while five years ago. I’ve since learned that both could be caused by Lupus. Honestly, I didn’t think I could’ve have it that long and not been diagnosed. From your post, I feel different about it now. I guess sometimes it takes a long time for accurate diagnosis. Hopefully, the biopsies will give me answers.