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!

@jessicanpayne

I was diagnosised with Tumid lupus and sjogerns syndrome last year. Recently I have been having bad arthritis symptoms in my hands and knees along with increased fatigue. My lab work is negative for all lupus markers. I was wondering if anyone else has experienced sle symptoms with tumid lupus.

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Hello @jessicanpayne, welcome to Connect. I am sorry to learn what you are going through but I am happy you joined us. There is another active discussion for Tumid Lupus with SLE Symptoms where your post may have more visibility so that you meet other members with similar symptoms. I'm tagging our moderator Kanaaz @kanaazpereira to see if we should move your post to the following discussion:

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

Kanaaz has also listed the following paper and discussions that might be helpful in one of her posts in the above discussion.

Journal of Clinical Rheumatology: “Coexistence of Tumid Lupus Erythematosus with Systemic Lupus” which you may wish to read, by clicking on this link
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2829660/

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

John

Liked by Jamie Olson

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I was diagnosised with Tumid lupus and sjogerns syndrome last year. Recently I have been having bad arthritis symptoms in my hands and knees along with increased fatigue. My lab work is negative for all lupus markers. I was wondering if anyone else has experienced sle symptoms with tumid lupus.

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Hello @jessicanpayne,

I moved your discussion and combined it with this existing discussion (as @johnbishop suggested), as it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

You mentioned that, "My lab work is negative for all lupus markers." and a few members have shared similar findings. @seesawer, who started this conversation, also noted, "that only 5-10% of tumid lupus patients have SLE symptoms (and almost none of those have positive ANA)."
May I ask if your doctor has offered an explanation for the arthritis, or prescribed any treatment?

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I was put on meloxicam last month and see my doctor again monday for worsening arthritis symptoms.

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I was diagnosed with Tumid Lupus about 12 years ago. No other issues at that time beyond a rash that would not go away. About 6 years ago I noticed I was always in pain and started seeing a Rheumatologist. She stated I have undifferentiated connective tissue disease but is not sure what it is. Have been on multiple meds over the years and am willing to try to help you. I also have fatigue, stomach issues, brain for and other annoying problems.

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@mnkennedy

I was diagnosed with Tumid Lupus about 12 years ago. No other issues at that time beyond a rash that would not go away. About 6 years ago I noticed I was always in pain and started seeing a Rheumatologist. She stated I have undifferentiated connective tissue disease but is not sure what it is. Have been on multiple meds over the years and am willing to try to help you. I also have fatigue, stomach issues, brain for and other annoying problems.

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Thank you for the help.I have the fatigue also. Do they think any of it may be because of the tumid lupus or the mix connective?

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@jessicanpayne

Thank you for the help.I have the fatigue also. Do they think any of it may be because of the tumid lupus or the mix connective?

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Honestly they are not sure right now since my markers are also negative. The only lab result that is abnormal for me is my ESR or SED rate which is in the 50s to 60s.

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I was diagnosed with tumid lupus in 2017; diagnosis confirmed via biopsy. I also have fibromyalgia and osteoarthritis which come with symptoms of fatigue, joint pain, muscle spasms/pain, brain fog, and nerve pain to name a few…all of which are also symptoms of SLE but my labs so far have been negative for SLE. However my labs for ESR tend to be slightly abnormal as well as labs for MPV, and Vitamin D (very low…taking 50K units of Vitamin D per week).

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Hello @efreeman, welcome to Connect. Thank you for sharing. I have polymyalgia rheumatica (PMR) which is currently in remission and also have osteoarthritis and small fiber PN. I have had different Sed rate (erythrocyte sedimentation rate) labs and my doctor took the time to explain what the test numbers mean. Mayo Clinic website has some good information on the test here:

Sed rate (erythrocyte sedimentation rate)
https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797

There are some conditions listed under the Accuracy of test results section that list some of the complicating factors for test results.

Have you found anything that helps you? Has your doctor recommended any treatments?

John

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@johnbishop

Hello @efreeman, welcome to Connect. Thank you for sharing. I have polymyalgia rheumatica (PMR) which is currently in remission and also have osteoarthritis and small fiber PN. I have had different Sed rate (erythrocyte sedimentation rate) labs and my doctor took the time to explain what the test numbers mean. Mayo Clinic website has some good information on the test here:

Sed rate (erythrocyte sedimentation rate)
https://www.mayoclinic.org/tests-procedures/sed-rate/about/pac-20384797

There are some conditions listed under the Accuracy of test results section that list some of the complicating factors for test results.

Have you found anything that helps you? Has your doctor recommended any treatments?

John

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I have had tumid lupus for 10 years. I have been evaluated by a local dermatologist, another from St. Elizabeth's hospital, UW hospital Madison, WI, and Mayo Clinic Rochester MN. All took biopsies and confirmed diagnosis. Took requested meds for first couple of years with nothing working. In last year I have been diagnosed with polymyalgia rheumatica. preparing for a mri I was given prednisone for allergic reaction the the die used. The prednisone relieved the muscle pain of polymyalgia rheumatica and initially removed the tumid lupus spots when I was taking 30 mg or 20 mg/day. I have been decreasing the prednisone 1 mg/day each month. When I reached 7 mg/day my muscle aches from the polymyalgia rheumatica came back. I was then told to add 12.5 mg methotrexate per week and went back up to 10 mg prednisone per day. I have since decreased by 1 mg/day and am back down to 7 mg/day with the methotrexate weekly and the muscle aches seem to be in control. Will continue the 1mg/month decrease of the prednisone to see if I can get off completely. I have blood draws monthly to check my sed rate markers and they have remained in the acceptable range for the last 3 months. Hope this helps you with your troubles.

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@billjan, thank you for sharing your experience and treatments. It is really helpful for those with personal experience to share their story. Thanks again.

John

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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.

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@mantramagic

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.

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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

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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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@mantramagic

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.

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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!!

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