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Tumid Lupus with SLE Symptoms?

Autoimmune Diseases | Last Active: Feb 26 3:30pm | Replies (101)

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@tdani75

I have had Tumid lupus since age 14yo. I am now 44yo. My daughter has SLE with a positive ANA. I have a Negative ANA. I also have all the signs of SLE and googled it and came across your post. I may have a diagnosis of SLE from my Rheumatologist I'm not exactly sure. But I am going to Birmingham to another Rheumatologist for further testing. My joints and muscles hurt me daily. I am taking Enbrel and Plaquenil 200mg twice daily. I have noticed some improvement. But in 2018 was admitted to the hospital with severe anemia and no major cause of blood loss. I had been treated for what my GI Dr. Said looked like a bad case of Crohn's disease and a duodenal ulcer which was superficial. Ive had kidney issues since my teen years also. Your case sounds so much like mine! I had been looking at benlysta online and it sounds like a good one. I do hope she will tey me on this drug also!

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Replies to "I have had Tumid lupus since age 14yo. I am now 44yo. My daughter has SLE..."

Helllo @tdani75, Welcome to Connect. It sounds like you have a lot of experience dealing with Tumid Lupus. I can't imagine how hard it has to be to have the disease at such a young age. I think it's a good thing to learn as much as you can like you are doing and become a better advocate for your health. Have you discussed the new drug Benlysta with your doctor? Here's more information in case you haven't already seen this one.

Lupus Foundation of America - Benlysta: What you need to know
-- https://www.lupus.org/resources/benlysta-what-you-need-to-know

I'm tagging @pennyjo33, @lanakaymedina, @jessicanpayne and @seesawer who may have some suggestions or helpful information for you.