1. < Autoimmune Diseases

Tumid Lupus

Posted by paulamiddleton @paulamiddleton, Oct 10, 2016

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

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troark | @tyroark | Aug 12, 2017
In reply to @cammieb95 "Hi , I was recently (last week) diagnosed with Tumid Lupus. Back in March I was..." + (show)
@cammieb95

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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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

REPLY
troark | @tyroark | Aug 12, 2017
In reply to @tyroark "Hi Paula, I was diagnosed with Tumid Lupus in April of 2016, two days before my..." + (show)
@tyroark

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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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.

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Parus | @parus | Aug 13, 2017

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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1 reply
troark | @tyroark | Aug 13, 2017
In reply to @parus "There are times I see what others recommend and hope no one else will try such..." + (show)
@parus

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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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.

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paulamiddleton | @paulamiddleton | Aug 13, 2017
In reply to @cammieb95 "Hi , I was recently (last week) diagnosed with Tumid Lupus. Back in March I was..." + (show)
@cammieb95

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.

Jump to this post

Thank you for the link. I am going to try some of these supplements.

REPLY
thestruggleisreal | @thestruggleisreal | Sep 10, 2017

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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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 11, 2017

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?

REPLY
3 replies
mnkennedy | @mnkennedy | Sep 11, 2017

My friends and family rarely remember how hard day to day life is for me. It can be very isolating and very hard not to push everything inside yourself. I try very hard to have patience and just remind them I cannot do that or I need to rest. My parents are getting much better. I have stopped talking to my friends about it. I also am so happy everyday that mine is not systemic as well. I cannot imagine going through any more.

REPLY
thestruggleisreal | @thestruggleisreal | Sep 11, 2017
In reply to @kanaazpereira "Hello @thestruggleisreal, Welcome to Connect; we're glad to have you join us, and thank you for..." + (show)
@kanaazpereira

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?

Jump to this post

I am on medication - Plaquenil, and every 6 months I have to have a special eye exam. I take some other meds so that I can be comfortable when trying to sleep. As far as heat, that is a tough one. Just a couple of days ago, I was seated outside in the shade, but the sun did come through the trees a couple of times, and that is all it took for me to be bedridden and in pain the following day. I try to not get overheated because that makes me have a bad reaction.

REPLY
paulamiddleton | @paulamiddleton | Sep 14, 2017
In reply to @kanaazpereira "Hello @thestruggleisreal, Welcome to Connect; we're glad to have you join us, and thank you for..." + (show)
@kanaazpereira

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?

Jump to this post

I also take Plaquenil and at night I sleep on "Chillow Pillows" which I love and keeps me cool at night. I do have a curiosity questions.., you spoke of getting just a touch of sun and it making you bedridden. Is it just pain or a physical sickness. The reason I ask is I can be exposed to the sun and while it will make me hot in a different way than others and I will probably get red splotches on my skin, these will disappear when I get out of the sun but I do not get sick so I am trying to understand your symptoms.. Thanks

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