Hi , I was recently (last week) diagnosed with Tumid Lupus. Back in March I was diagnosed with discord lupus. I Have extremely scarred ears from the discord lupus. My ears have been damaged for the last 5 years and the doctors kept telling me I just had adult eczema. On my 21st birthday I got the proper diagnoses of discord lupus from a lupus dermatologist specialist in the Houston area. My original diagnoses came from when I went in for my well woman exam, I had two masses in my breast that have been there since I was 17, I got a mammogram and the doctor that came in to tell me my results was extremely shocked, I had identical masses in my breast that weren’t cancer, she explained how rare and unusual that was and suggested I might have Lupus mastitis, which is an EXTREMELY rare form of Lupus where there have only been about 23 cases in the US. I started going to my dermatologist and she started me on topicort cream and steroid shots in my face. I don’t have the common symptoms of SLE or discord Lupus or even Tumid Lupus. Only my ears are covered in lessons , I have a small lesson on my face from doing a UV light treatment, I have one lesson on my scalp ,but I still have a head full of hair, it wasn’t until recently that I started having large masses form in my arm , so I began getting steroid shots in my arm now. I am on plaquneil but I do not take it like I should, but the side effects scare me and I rather take a natural approach to Lupus. I have noticed how hot I have been lately and after reading these posts, it makes me think my body temperature is related to my Lupus. I also don’t have any positive ANA or show signs of SLE but my rheumatologist seems to believe I do from other blood work. I also an very anemic and I take Iron pills, vitamin D, thyme , cod oil and garlic pills.

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Hi Paula, I was diagnosed with Tumid Lupus in April of 2016, two days before my 20th birthday. I have symptoms that fall outside of the norm as well. I have also been diagnosed with Fibromyalgia, degenerative arthritis (although it is looking more and more like Rheumatoid Arthritis), IBS, and Dishydrotic eczema. I am highly uv sensitive, had plaques-but they change form, shape and type everytime I flare (mimicking other skins disorders), as well as the butterfly rash, pleurisy, temperature sensitivity, neuropathy, swelling joints (shoulders, wrists, fingers, hips, and knees), muscular pain and spasms, migraines, fatigue, etc. Up until I started sesing my current rheumy, I was told it was impossible to have symtoms that were not skin-related. I did not have all of these symptoms at first, but they have been getting worse. My mother has tumid lupus with positive ANA. What are your symptoms? I hope you’re doing well.

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There are times I see what others recommend and hope no one else will try such suggestions. Okay to suggest…mentioning a specific company I am not in agreement with so try a PM…a suggestion.

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Hi , I was recently (last week) diagnosed with Tumid Lupus. Back in March I was diagnosed with discord lupus. I Have extremely scarred ears from the discord lupus. My ears have been damaged for the last 5 years and the doctors kept telling me I just had adult eczema. On my 21st birthday I got the proper diagnoses of discord lupus from a lupus dermatologist specialist in the Houston area. My original diagnoses came from when I went in for my well woman exam, I had two masses in my breast that have been there since I was 17, I got a mammogram and the doctor that came in to tell me my results was extremely shocked, I had identical masses in my breast that weren’t cancer, she explained how rare and unusual that was and suggested I might have Lupus mastitis, which is an EXTREMELY rare form of Lupus where there have only been about 23 cases in the US. I started going to my dermatologist and she started me on topicort cream and steroid shots in my face. I don’t have the common symptoms of SLE or discord Lupus or even Tumid Lupus. Only my ears are covered in lessons , I have a small lesson on my face from doing a UV light treatment, I have one lesson on my scalp ,but I still have a head full of hair, it wasn’t until recently that I started having large masses form in my arm , so I began getting steroid shots in my arm now. I am on plaquneil but I do not take it like I should, but the side effects scare me and I rather take a natural approach to Lupus. I have noticed how hot I have been lately and after reading these posts, it makes me think my body temperature is related to my Lupus. I also don’t have any positive ANA or show signs of SLE but my rheumatologist seems to believe I do from other blood work. I also an very anemic and I take Iron pills, vitamin D, thyme , cod oil and garlic pills.

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Hello @thestruggleisreal,

Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!

I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888

@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?

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Hello @thestruggleisreal,

Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!

I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888

@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?

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Hello @thestruggleisreal,

Welcome to Connect; we’re glad to have you join us, and thank you for sharing. So often, symptoms of chronic conditions such as lupus and fibromyalgia are invisible to the naked eye, but I can imagine how awful you must feel – it’s like having an invisible illness!

I encourage you to read through past posts in this discussion – they are incredibly informative, and I’m certain @paulamiddleton @mnkennedy @sandpiper09 @tyroark and others will join in with their insights. I’d also like to introduce you to some other members who have experience with different forms of lupus. Please meet @WendyAnne @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888

@thestruggleisreal, how do you cope with your symptoms? Besides medication, do you have any suggestions or tips for getting relief, especially from heat?

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Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.

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Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication… Please share your knowledge of Tumid Lupus.

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