Tumid Lupus with SLE Symptoms?

I was diagnosed with tumid lupus in 2013, 2 biopsies, 3 rounds of blood testing...There was far less research available then and it seemed to be general agreement within the medical community that this form of lupus was triggered solely by exposure to sunlight, florescent light, UVA/UVB. However, though I do not have SLE type symptoms beyond fatigue after exposure or during flare ups, I can say with confidence after years of taking proactive steps to control this illness, that it is not just sunlight that triggers flare ups. It is not just poor diet and alcohol that exacerbates the rashes. It can be a combination of minimal sunlight, heat, stress or prolonged, independent exposure to all three of those sources, per my experience. A diet heavy in meat and dairy seems to lead to longer and larger flare ups. I'm pretty much a vegetarian now. Summer season + heavy meat/dairy diet + alcohol + intense activities, even just within one weekend's time, is a dangerous recipe and can cause such uncomfortable flare ups that I am confined to my home for up to 2 weeks. It has significantly impacted my quality of life even with my commitment to preventative measures ( I lost 30 lbs due to my diet change alone - I should be thrilled right?). I am grateful that I do not have the lupus version that puts my internal organs at risk. However, living a normal life with this version, tumid lupus, has proven to be impossible. I never wanted to see it as a disability. But I am coming to terms with the reality that it sincerely is a disability in that it affects how,where and when I can work, socialize, date, engage in outdoor or even indoor fitness activities..I started anti-depressants a few months ago b/c the acceptance of a life full of "limits" has not been easy. 5 years into the official diagnosis and this is where I am at with it - angry, sad, exhausted at trying to get people to understand the limits placed on me by a "rare form of lupus" that no one has ever heard of and cannot see on me until i'm in the middle of a flare up which I work hard to avoid. Doing things alone is easier..I have a rescue dog. That has been a big help.

Hello @mantramagic, welcome to Mayo Clinic Connect. I have a few autoimmune diseases and can sometimes get to feeling down about it when I can no longer do what I used to be able to do. Thank you for sharing your story here. I'm glad that you have a rescue dog and it has been a big help. There is a new discussion created by @hopeful33250 that I think might be helpful for you. I would recommend reading through and joining in on the discussion here:

Groups > Mental Health > Loving Kindness: Live Healthier and Happier
-- https://connect.mayoclinic.org/discussion/loving-kindness-live-healthier-and-happier/

If you don't mind my asking, what breed of dog is your rescue dog?

John

I share the same issue. I had a positive tumid lupus biopsy and have been been diagnosed with sle as well. Loss of hearing, vision, muscle spasms and pain, joint pain, it attacks my heart, lungs, and nervous system ect. Yet, my markers come back normal even when inflammation is visible.

I too was diagnosed with Tumid Lupus in late 2014 and because there is so little information about it it’s hard to figure things out. But I have a few questions for you.. you say that you’ve been confined to your house before with an outbreak. Can u explain that a little. My skin hurts very much sometimes even with the medication but I work ( with my office lights off) and continue
on .so when you are confined are u broken out with a rash or is it something more?? I’m really not trying to be nosy but I’m trying to understand because I have the same illness but it’s never gotten to that point. Thank you in advance for any answers you can provide!!

Hi @lee21, welcome to Mayo Clinic Connect. Thank you for sharing your symptoms. Have you found anything that helps make you feel a little better?

@efreeman, @billjan, @mantramagic and @paulamiddleton have also recently shared symptoms and may be able to offer some suggestions or information to help you.

John

I was just diagnosed with LET as well. My bloodwork comes back negative for SLE every time but I ache all the time and have severe exhaustion and memory/focusing problems. Searching for answers..

I fit those symptoms to a t. I am having a hard time convincing my Drs. Tho because of my negative blood test results.

I have exactly the same things going on. But because tumid lupus is so rare I've been told that my other symptoms besides the rash are in my head. It is frustrating to say the least. Is the mayo clinic the right place to get the help I need?

Hello @lanakaymedina, I’m so sorry to learn about all that you are going through, but glad that you have joined this community. You might be interested in the following paper in the Journal of Clinical Rheumatology: “Coexistence of Tumid Lupus Erythematosus with Systemic Lupus” -- http://bit.ly/2oUz3Cx

There are a few discussions on Connect that might interest you:
Tumid Lupus: http://mayocl.in/2oQcJtT
Stills Disease: http://mayocl.in/2ogiLAT (@cathyh has written extensively about lupus in this discussion)
Multiple family members with autoimmune diseases….is there a link? http://mayocl.in/2f29HxG
Know the Symptoms of Lupus: http://mayocl.in/2oUyXe0

Mayo Clinic would be a good place to get help. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The
contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Diagnosed with tumid lupus in 2007, confirmed via biopsy 3x. Diagnosed with rosacea 1998, yet it was the butterfly rash from lupus. Moved a few times and each time have to drag my medical records with me. Proof it's tumid lupus with SLE not another test or biopsy please. Only once did the ANA test came back positive, so each time they second guess the other doctors. Kept telling me my flares where from sunlight but even during the NY winters it's covering my body. Dermatologist prescription of Clobetasol topical ointment that can be used for only to weeks, asked if available by the gallon since rashes covered entire back, upper arms and chest area. Have always been frustrated that a lot of doctors have no clue what it is or how to treat it. White Blood count has been elevated for 2 years now, clotting issues and now vasculitis bruising, high blood pressure and I want to scream when they ask me so how you feeling.
So many allergies from other drugs I'm afraid to take most. Pinched cervical and nerve damage, given Meloxicam then Gabapentin, joy another rash and hives.
Stressed to the max.... Anxiety, depression, fatigue, fever, brain fog, inflammation, pain the list goes on not enough boxes to check anymore.
Moved from NY, now In Florida trying to find a Internal medicine Primary care doctor that doesn't think I'm crazy. Told me to see mental health and find a rheumatologist he doesn't think it's lupus because the ANA test came back negative and gave me antibiotic because my white cells elevated, it's just an infection, then insulted me, the bruising is old age that everyone at 60 starts to burse easy. Be nice smile and scream in the car.
Rheumatologist in NY had me on Duloxetine, Hydroxyzine, giving me HYDROXYCHLOROQUINE SULFATE then put me on Folic Acid with METHOREXATE SODIUM injections to suppress immune system to lower white blood count. Told to limit my exposure to people while on it, okay I'll stay in the box and play alone, LOL...
Was a pharmacy tech for 6 years, some of these chemicals are dangerous and cause additional side effects and issues with organs.
Feeling like a test subject and having a mixture tossed at me is causing more flairs, stress and feeling like no body knows the cause, how to treat it and there isn't any right test to confirm it as 100%. We need more doctors educated to what Tumid Lupus and SLE really is, a debilitating, stressful and life changing disease with no cure. It mimic so many other things that it's been a roller coaster of will try this first and see. I'm not the only one on this ride but has anyone found a combination of diet and medicine that is safe and works.Only thing that works to keep my sanity is laughter and sarcasm.