Tumid Lupus with SLE Symptoms?

Posted by seesawer @seesawer, Apr 8, 2017

Hi! A couple years ago I visited the Mayo Clinic, which ultimate led to a biopsy and tumid lupus diagnosis.

Since then, I’ve also gotten the SLE label. While I don’t have positive ANA, I have every SLE symptom under the sun (including tendinitis, painful joints, R.A.-like nodules and deformed finger joints, MS-like symptoms/spasms/muscle weakness, hair loss, 0 in both eyes on Shrimer’s test, tachycardia/flushing, some high creatinine readings, history of colitis/lower G.I. bleeding, vasculitis bruising, looped capillaries, blah blah blah).

I’ve done CellCept (which helped a lot but caused me to puke all the time and lose 50 pounds). I also (miraculously enough) qualified for Benlysta and still go for once-a-month infusions. It doesn’t last as long as I’d like, but it’s changed my life. (I literally live for the first 2 weeks of the Benlysta cycle). 🙂

I understand tumid lupus is fairly rare, and that only 5-10% of tumid lupus patients have SLE symptoms (and almost none of those have positive ANA). I’m wondering if anyone else out there fits this profile? If so, I’d love to compare notes. Thanks!

@lee21

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.

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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

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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..

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

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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?

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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.

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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.

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Yes, I fit the profile and it's been a roller coaster of a ride. Doctors, many really don't understand that it mimic so many other things. Wasted thousands of dollars on tests. Understand there is no easy way to state everyone has same profile. We all have similar symptoms and depends of doctors knowledge of Tumid Lupus and or SLE. Then it's the side effects from chemicals they put you on also. Someday I hope they will find a better test then ANA for those of us that don't show positive, yet have all the symptoms. .

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@pennyjo33

Yes, I fit the profile and it's been a roller coaster of a ride. Doctors, many really don't understand that it mimic so many other things. Wasted thousands of dollars on tests. Understand there is no easy way to state everyone has same profile. We all have similar symptoms and depends of doctors knowledge of Tumid Lupus and or SLE. Then it's the side effects from chemicals they put you on also. Someday I hope they will find a better test then ANA for those of us that don't show positive, yet have all the symptoms. .

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Hi @pennyjo33, Welcome to Connect. Thank you for joining the discussion and sharing what you've learned. I'm tagging @mnkennedy, @pdesar65, and @lanakaymedina to see if they are able to share any information or suggestions with you.

Have you done any research on diet to help with your tumid lupus symptoms? From what I've read there is no special diet but there are some things to avoid and try.

Lupus Foundation – Diet and nutrition with lupus
https://www.lupus.org/resources/diet-and-nutrition-with-lupus

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I have had Tumid lupus since age 14yo. I am now 44yo. My daughter has SLE with a positive ANA. I have a Negative ANA. I also have all the signs of SLE and googled it and came across your post. I may have a diagnosis of SLE from my Rheumatologist I'm not exactly sure. But I am going to Birmingham to another Rheumatologist for further testing. My joints and muscles hurt me daily. I am taking Enbrel and Plaquenil 200mg twice daily. I have noticed some improvement. But in 2018 was admitted to the hospital with severe anemia and no major cause of blood loss. I had been treated for what my GI Dr. Said looked like a bad case of Crohn's disease and a duodenal ulcer which was superficial. Ive had kidney issues since my teen years also. Your case sounds so much like mine! I had been looking at benlysta online and it sounds like a good one. I do hope she will tey me on this drug also!

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@tdani75

I have had Tumid lupus since age 14yo. I am now 44yo. My daughter has SLE with a positive ANA. I have a Negative ANA. I also have all the signs of SLE and googled it and came across your post. I may have a diagnosis of SLE from my Rheumatologist I'm not exactly sure. But I am going to Birmingham to another Rheumatologist for further testing. My joints and muscles hurt me daily. I am taking Enbrel and Plaquenil 200mg twice daily. I have noticed some improvement. But in 2018 was admitted to the hospital with severe anemia and no major cause of blood loss. I had been treated for what my GI Dr. Said looked like a bad case of Crohn's disease and a duodenal ulcer which was superficial. Ive had kidney issues since my teen years also. Your case sounds so much like mine! I had been looking at benlysta online and it sounds like a good one. I do hope she will tey me on this drug also!

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Helllo @tdani75, Welcome to Connect. It sounds like you have a lot of experience dealing with Tumid Lupus. I can't imagine how hard it has to be to have the disease at such a young age. I think it's a good thing to learn as much as you can like you are doing and become a better advocate for your health. Have you discussed the new drug Benlysta with your doctor? Here's more information in case you haven't already seen this one.

Lupus Foundation of America – Benlysta: What you need to know
https://www.lupus.org/resources/benlysta-what-you-need-to-know

I'm tagging @pennyjo33, @lanakaymedina, @jessicanpayne and @seesawer who may have some suggestions or helpful information for you.

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@lexonpark

Found some Nodes in my neck. Had an Ultrasound Benign Lymph Nodes. Anyone with Immune Diseases have this experience. I have also Been Diagnosed with Lupus.

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Hello @lexonpark, Since you mentioned you have been diagnosed with Lupus I'm wondering if your question might have more visibility in the following discussion where other members may share your symptoms.

> Groups > Autoimmune Diseases > Tumid Lupus with SLE Symptoms?
https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/

You mentioned the ultrasound showed benign lymph nodes. Did the doctor give you an explanation? Just wondering if benign means a tumor on the lymph nodes or just swollen lymph nodes which can be a symptom of lupus.

Living-Symptoms of SLE – lupus
https://www.lupuscanada.org/living-symptoms-of-sle/

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Found some Nodes in my neck. Had an Ultrasound Benign Lymph Nodes. Anyone with Immune Diseases have this experience. I have also Been Diagnosed with Lupus.

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@lexonpark

Found some Nodes in my neck. Had an Ultrasound Benign Lymph Nodes. Anyone with Immune Diseases have this experience. I have also Been Diagnosed with Lupus.

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Hi @lexonpark you may have noticed I moved your post to this discussion that @johnbishop mentioned so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

I'd like to repeat John's question and ask if a doctor has given you an explanation for the lymph nodes?

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I received my results when I went for my IVIG. So busy talking about my experience with Gammaguard (was getting Gamunex) that we didn't talk about the Ultasound report. Will make an appointment with my Internist and Rheumatologist. Will also speak to my Hematologist on my next visit.

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@ejlm

Hi,
I guess I will start from what I know
First I was a very healthy kid. I have had a lot of ongoing stressors, but healthy. I will try to put stress in some sort of light. Trauma stresses of murder of a close one, molestation with crazy mind games and physical abuse. 3 rapes, abusive relationship in high school. Then another. Young pregnancy which I was abused during and went into early labor. Went toxic after a beating and was induced. Three more pregnancies all with pre eclampsia. Extreme abuse in the home and was eventually left homeless and a childcare provider suffocated my son. Went from all that to single mother of four little kids trying to go to college….ended up joining the military was released due to unknown medical issues (will swing back to that). Married again, very tragic end to that. Married again was working long hours found out person was abusing my kids and snorting cocaine. Now I am married again and we have had some very big downs. Son ended up in crazy treatment, so much court, husband is now in rehab for alcoholism. Really it never flipping stops. Quit my job trying to deal with all of this and having flare up after flare up of who the heck knows what.
Ok keys here for medical.
During pregnancies I was put on thyroid meds for the fourth one. Small dose and never followed up on it.
In the military I was top notch. Had a 4.26 minute mile, weighed 118 lbs. 104 situps in a minute, they called me superstar and not in a bad way. I had extremely high scores across the board and felt amazing.
Then all of a sudden I could not hold any vitamin D or iron. I looked like I was gang raped by a group of linemen. Girls who had to shower with me left in tears. I was a walking bruise…..deep awful bruises. It was grotesque looking. My abdomen, inner thighs, legs, back, breasts, arms. Everything was a bruise. I couldn't stand or sit, I would just fall over. Writing in class would become eligible and would fall off my chair.
Fast forward, took a discharge but no one really could figure it out. Eventually I began really struggling with my weight and I was running miles a day and eating a bowl of cream of wheat. I was drop dead tired all the time and was always a wreck. Eventually a doctor tested my thyroid levels. Cant remember what they were but was put on a dose of 250. Not 25, 250. When I picked it up from the pharmacy he looked at me like I was insane. Tested positive for hashimotos and the story of silly bull has continued.
I started developing these weird bruises on my legs. They started as a deep insane itch and would turn into months long itchy bruises.
Always fighting swelling.
I have a huge butterfly rash across my face that becomes very prominent during times of stress or flare ups.
I get crazy joint pain that makes no sense.
My hands sometimes just stop working and I drop things.
This summer the bottoms of my feet just went crazy. My doctor called them lupus feet and sent me to an endo that basically laughed me out of the room and said it's just your hashimoto's. All of a sudden fibromyalgia showed up on my chart? Mmmmk. I did nothing and my feet swelled like balloons. I think I stepped on an acorn, not sure. Today I closed a door and half my hand blew up. Like painful awful hell. I shut a door, that was it. I have been super stressed and I know I have been having a lot of crazy fatigue and joint issues but this was flat out all the tissue in my hand became hard and huge and painful. Not thumb, just the four fingers and top of my palm. Now I am getting the swelling down and I have a weird bruising that is all washed/spread out and now my palms have dots that have an insanely deep itch like what I get on my legs and what happened to my feet over the summer. Other than that just sheer fatigue. Especially in my shoulders and arms.
I understand stress causes flare ups but I cant find anything that says this is a hashimoto's type flare. I am tired of fighting with it.
My weight is blah and I have been amazingly infertile since my last child. Not complaining but always found it strange. Also doctors have always said the same thing to me. If you dont want any more children why do you care….well for someone who had four pregnancies between 98 and 04 just seems a little strange to go from Being laughed at for being overly fertile to not fertile at all.
Only other thing is at 39 I have been told I am most possibly in early onset menopause. Just keeps getting better.
Other randoms I now have migraines…I had a clean scan a year and a half ago, then I was scanned again about a half year ago for continuing migraines and a mass that had developed in my face. They said it was a weird cluster (I call it weird) of veins that have bunched together near my jaw? I thought it may have been the cause of migraines but they said no, just a thing that happens.
I do not mean to sound crabby….lol. my sarcasm can be a little off putting, but I really just want to get to a good place and not sure how when I dont know what I am up against.

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Hello @ejlm, Welcome to Connect. I know you must be terribly frustrated trying to figure out what's causing your symptoms. From what I have read, one of the symptoms of Lupus is the butterfly rash across the face.

Mayo Clinic – Lupus Symptoms & Causes: https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789

PubMed also has some information that you may find helpful here: The Butterfly Rash and the Malar Flush. What Diseases Do These Signs Reflect?
https://pubmed.ncbi.nlm.nih.gov/1824645-the-butterfly-rash-and-the-malar-flush-what-diseases-do-these-signs-reflect/

I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where it will receive more visibility.

> Groups > Autoimmune Diseases > Tumid Lupus with SLE Symptoms?
https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/

@ejlm have you thought about getting a second opinion at a major teaching hospital or Mayo Clinic? If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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