I have been diagnosed with Tumid Lupus which is a rare form of Lupus and only affects the skin but my symptoms fall outside the norm..Looking for
someone else with this condition and their symptoms and medications?? Need additional answers no one can seem to provide me
@cammieb95, you mentioned taking a natural approach to lupus; may I ask if you would share more about treatment paths you’ve explored? Have they helped?
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.
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.
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.
I take plaquenil, cymbalta, neurontin, and then supplements (they’re my saving grace). To help with cognitive function and energy I take ginko biloba and korean red ginseng root. Klamanth blue green algae is great, because it effectively removes all of the built up toxins and toxic heavy metals that the body can’t do naturally. Those are the main three supplements that i swear by, although I take l glutathione, fibro essentials (made for those with fibromyalgia; I know it includes b12 and magnesium), and probiotics. I have found that fluorescent lights are much worse for my lupus activity than the sun. I wonder if it has something to do with the sun being natural as opposed to artificial. I have hot flashes, but I also have periods where I’m freezing; I think it’s my sensitivity to temperature. Unfortunately, I have not made any headway in that arena. I have searched all of the tumid lupus academic journals I had access to, and it seems scientific research is finally picking up speed.
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.
I take plaquenil and Lyrica but have not tried any of the other supplements you mentioned. Maybe I will try those since you have had luck with them. I too am way more sensitive to fluorescent lighting than sun but really do not have a problem with lesions. The only thing that the light does to my skin is make smooth red patches that go away when I get under a fan or air conditioner. There are no left over marks. If I stay under fluorescent lights too long I feel like I am getting sun burned but may have no marks on my skin just extreme heat that comes from my body. My dermatologist even says I have symyi shouldn’t have and he doesn’t know why. But I really do think I will try the supplements you mentioned at this point I am willing to try anything if I get relief.
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.
I’ve read that most people with TLE have the bumps you mentioned, but I do not. Apparently it is rare to have tumid lesions/bumps below the waist, and my biopsy came from my leg. Do your bumps only form in areas exposed to uv radiation? Before plaquenil I could be wearing jeans, sneakers, a long sleeved shirt, and a jacket while wearing spf 100 sun block with helioplex and get lesions on my back, arms, legs, and feet. Multiple small lesions would form in an area of about 6″×6″ before turning into one giant red plaque. They would then swell, making my arm twice it’s normal size, ang my arm would turn fire engine red and be hot to the touch. Since tumid lupus bumps are mucin deposits in the subcutaneous tissue that are the result of a reaction with uv radiation, thus inflaming the surrounding tissue (as well as trapping and inflaming the collagen in the region), and the huge plaques would press on my nerves. Thankfully, I have not dealt with those in over a year. Do you get the sunburn feeling everywhere? The closest symptom I’ve had to yours would be the butterfly rash. I have a Swanson Health Products account, which is where I get all of my supplements. They are generally way cheaper, and they tell you the units of the ingredients, so I think they’re more trustworthy. My boyfriend’s mother has hashimoto’s and fibro, and sent me home with a week supply of most of the supplements I mentioned. My mother and I take the same supplements, and she says they’ve helped her tremendously. She has tumid lupus with positive ANA and fibromyalgia. For hot flashes you may want to look into valerian root, black cohosh, and/or licorice root. They are natural as well, and my mother says black cohosh helped lessen the intensity of her hot flashes. I’m just throwing out ideas, so I’m sorry this post is so long. If you try them out, I’d love to know how they work for you. It took me exhausting all other options before I gave in and decided to give supplements a try as well. I hoped this helped!
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.
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.
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.
Paula, with insomnia keepimg me up, I started doing some research for you amd found an abstract from a study done by nih on progesterone effectively treating hot flashes without withdrawals. It may be of interest to you, so here’s the link: https://www.ncbi.nlm.nih.gov/pubmed/22849758 Also, I read an article a few months back about lyrica/neurontin and how detrimental they are to the formation of brain synapses.
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.
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.
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.
I was diagnosed with Tumid Lupus in 2004. It is rare, and dermatologists and rheumatologists don’t always have answers. In addition, my skin is fair, and after many years of being of sun worship as a young girl, I have tons of skin cancer and basal cell scars. No sun for me. I was diagnosed with fibromyalgia in 2010. Joint and muscle pain, fatigue, etc. BUT, I look fine on the outside. Sometimes I think my husband and children forget that I am not feeling well on the inside. On the days I feel OK, I push myself to get as much done as possible, and then for the next couple of days, I pay the price. Same old story. I am forever thankful though that this lupus is not systemic.Just thought I’d share my 2 cents.
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Hello @cammieb95,
Welcome to Connect.
I’m tagging a few members – @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @rayhastings @wmoser2613 @buttons @aimeenc @seesawer @cathyh @jewel8888 @dmkmom04 @paulamiddleton @kdubois @sandpiper09 @jazzyuk51 @whyus – who have experience with the various forms of Lupus. I’m sure they will return with some more insight for you.
@cammieb95, you mentioned taking a natural approach to lupus; may I ask if you would share more about treatment paths you’ve explored? Have they helped?
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.
I take plaquenil, cymbalta, neurontin, and then supplements (they’re my saving grace). To help with cognitive function and energy I take ginko biloba and korean red ginseng root. Klamanth blue green algae is great, because it effectively removes all of the built up toxins and toxic heavy metals that the body can’t do naturally. Those are the main three supplements that i swear by, although I take l glutathione, fibro essentials (made for those with fibromyalgia; I know it includes b12 and magnesium), and probiotics. I have found that fluorescent lights are much worse for my lupus activity than the sun. I wonder if it has something to do with the sun being natural as opposed to artificial. I have hot flashes, but I also have periods where I’m freezing; I think it’s my sensitivity to temperature. Unfortunately, I have not made any headway in that arena. I have searched all of the tumid lupus academic journals I had access to, and it seems scientific research is finally picking up speed.
I take plaquenil and Lyrica but have not tried any of the other supplements you mentioned. Maybe I will try those since you have had luck with them. I too am way more sensitive to fluorescent lighting than sun but really do not have a problem with lesions. The only thing that the light does to my skin is make smooth red patches that go away when I get under a fan or air conditioner. There are no left over marks. If I stay under fluorescent lights too long I feel like I am getting sun burned but may have no marks on my skin just extreme heat that comes from my body. My dermatologist even says I have symyi shouldn’t have and he doesn’t know why. But I really do think I will try the supplements you mentioned at this point I am willing to try anything if I get relief.
I’ve read that most people with TLE have the bumps you mentioned, but I do not. Apparently it is rare to have tumid lesions/bumps below the waist, and my biopsy came from my leg. Do your bumps only form in areas exposed to uv radiation? Before plaquenil I could be wearing jeans, sneakers, a long sleeved shirt, and a jacket while wearing spf 100 sun block with helioplex and get lesions on my back, arms, legs, and feet. Multiple small lesions would form in an area of about 6″×6″ before turning into one giant red plaque. They would then swell, making my arm twice it’s normal size, ang my arm would turn fire engine red and be hot to the touch. Since tumid lupus bumps are mucin deposits in the subcutaneous tissue that are the result of a reaction with uv radiation, thus inflaming the surrounding tissue (as well as trapping and inflaming the collagen in the region), and the huge plaques would press on my nerves. Thankfully, I have not dealt with those in over a year. Do you get the sunburn feeling everywhere? The closest symptom I’ve had to yours would be the butterfly rash. I have a Swanson Health Products account, which is where I get all of my supplements. They are generally way cheaper, and they tell you the units of the ingredients, so I think they’re more trustworthy. My boyfriend’s mother has hashimoto’s and fibro, and sent me home with a week supply of most of the supplements I mentioned. My mother and I take the same supplements, and she says they’ve helped her tremendously. She has tumid lupus with positive ANA and fibromyalgia. For hot flashes you may want to look into valerian root, black cohosh, and/or licorice root. They are natural as well, and my mother says black cohosh helped lessen the intensity of her hot flashes. I’m just throwing out ideas, so I’m sorry this post is so long. If you try them out, I’d love to know how they work for you. It took me exhausting all other options before I gave in and decided to give supplements a try as well. I hoped this helped!
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
Paula, with insomnia keepimg me up, I started doing some research for you amd found an abstract from a study done by nih on progesterone effectively treating hot flashes without withdrawals. It may be of interest to you, so here’s the link: https://www.ncbi.nlm.nih.gov/pubmed/22849758 Also, I read an article a few months back about lyrica/neurontin and how detrimental they are to the formation of brain synapses.
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.
Thank you for the suggestion, I see your point. However, I posted the link because only one company makes them, and I was replying to a question.
Thank you for the link. I am going to try some of these supplements.
I was diagnosed with Tumid Lupus in 2004. It is rare, and dermatologists and rheumatologists don’t always have answers. In addition, my skin is fair, and after many years of being of sun worship as a young girl, I have tons of skin cancer and basal cell scars. No sun for me. I was diagnosed with fibromyalgia in 2010. Joint and muscle pain, fatigue, etc. BUT, I look fine on the outside. Sometimes I think my husband and children forget that I am not feeling well on the inside. On the days I feel OK, I push myself to get as much done as possible, and then for the next couple of days, I pay the price. Same old story. I am forever thankful though that this lupus is not systemic.Just thought I’d share my 2 cents.