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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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Where do you all get the Fibro essentials? I have Fibro and Hashimotos along with MANY other things. Thank you
I get them from Swanson online. For more info here is the link. https://www.swansonvitamins.com/swanson-condition-specific-formulas-fibro-essentials-90-veg-caps
Thank you for the link. I am going to try some of these supplements.
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Hi Cammie,
I was diagnosed with Tumid Lupus last April (two days before my 20th birthday), followed my fibromyalgia, ibs, and degenrative arthritis in my shoulders, wrists, fingers, hips, and knees. I tried the natural approach, but the huge plaques, pleurisy, etc had me reaching for my bottle of plaquenil religiously. I haven't had any side effects, and I've been on it for a year. Have you found that your lesions change? I've had a ton of different phases of lesions. Right now my lupus is mimicking dishydrotic eczema. Before that it mimicked panniculitis, and prior to that MRSA lesions. I swear by my supplements. I take fibro essentials, l glutathione, ginko biloba, probiotics (because 70% of the immune system is in the stomach), and klamanth blue green algae. They have changed my life. How has the garlic treated you? I've read that it can make some worse.