1. < Autoimmune Diseases

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!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Texas Freedom | @oregongirl | Mar 24, 2018
In reply to @holley25 "I am 25 years old and have been diagnosed with tumid lupus. When a rash that..." + (show)
@holley25

I am 25 years old and have been diagnosed with tumid lupus. When a rash that looked big started appearing on my elbows I decided to see a dermatologist. The rash was also on my hands and feet with swelling. My doctor did a skin biopsy on my elbow and my result is tumid lupus. I thought I would share even though this is very new to me. Blood test have been taken to see if the lupus is more. I may sound not as educated with lupus and that is because I feel in the dark about it. I am not fair skinned or to my knowledge sensitive to sun. My eyes are my only sensitivity...in the last year have been extremely sensitive to Bright lights. I have had pain in my hands and back and neck for over a year now. I have poor focus that is diagnosed as ADHD and when I have chest pains I just accepted it was anxiety. I have always considered these to be apart of depression. Thanks for reading.

Jump to this post

Holly, hand in there and read up on your diagnosis. But don't accept description until Dr gives you more details. Best wishes.

REPLY
CDH25 | @holley25 | Mar 24, 2018
In reply to @holley25 "I am 25 years old and have been diagnosed with tumid lupus. When a rash that..." + (show)
@holley25

I am 25 years old and have been diagnosed with tumid lupus. When a rash that looked big started appearing on my elbows I decided to see a dermatologist. The rash was also on my hands and feet with swelling. My doctor did a skin biopsy on my elbow and my result is tumid lupus. I thought I would share even though this is very new to me. Blood test have been taken to see if the lupus is more. I may sound not as educated with lupus and that is because I feel in the dark about it. I am not fair skinned or to my knowledge sensitive to sun. My eyes are my only sensitivity...in the last year have been extremely sensitive to Bright lights. I have had pain in my hands and back and neck for over a year now. I have poor focus that is diagnosed as ADHD and when I have chest pains I just accepted it was anxiety. I have always considered these to be apart of depression. Thanks for reading.

Jump to this post

@johnbishop thank you for the support and response. My dermatologist advised me to wear medical sunscreen in my daily routine and to moisturize daily. I have two creams to help it as well and follow up blood work. I have the plaque rash and am recommended to cover my skin when outside. My hands burn and my feet but the elbows are way better with no rash. It disappeared. I was diagnosed with PTSD and anxiety and thought that it was just a stress rash. The pain I feel I also thought it was just symptoms of depression. My great grandmother was diagnosed with lupus but I found this information out after my diagnosis. My dad passed away from lymphoma as well nine years ago. I hope this isn’t overshare but I will be seeing someone I hope that can give me some more answers. My dermatologist was very helpful and caring towards me. The pain that I have had has been going on for years. When the rash on my feet started feeling like I had pebbles in my shoes that is when I decided to get everything looked at. The diagnosis is very interesting and puzzling and I hope that I find answers. @oregongirl thank you

REPLY
CalcinosisBaby | @kgoodwin9 | Mar 24, 2018
In reply to @holley25 "I am 25 years old and have been diagnosed with tumid lupus. When a rash that..." + (show)
@holley25

I am 25 years old and have been diagnosed with tumid lupus. When a rash that looked big started appearing on my elbows I decided to see a dermatologist. The rash was also on my hands and feet with swelling. My doctor did a skin biopsy on my elbow and my result is tumid lupus. I thought I would share even though this is very new to me. Blood test have been taken to see if the lupus is more. I may sound not as educated with lupus and that is because I feel in the dark about it. I am not fair skinned or to my knowledge sensitive to sun. My eyes are my only sensitivity...in the last year have been extremely sensitive to Bright lights. I have had pain in my hands and back and neck for over a year now. I have poor focus that is diagnosed as ADHD and when I have chest pains I just accepted it was anxiety. I have always considered these to be apart of depression. Thanks for reading.

Jump to this post

Thanks for sharing John. I think we all need to really share in order to find things that are consistent between us to give us other ideas for research. Doctors seldom have the answers unless the blood work is a definite yes or no.

REPLY
Texas Freedom | @oregongirl | Jul 7, 2018
In reply to @whyus "About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as..." + (show)
@whyus

<p>About 3 weeks ago my dermatologist took a skin biopsy. The pathology report came back as a definitive diagnosis of Systemic lupus erythematosus (LUPUS)</p><p>I can't ses an RA Specialist until September. But I just wondered if any of you have experienced any of these complaints of mine:<br />(1) Tired. I could sleep all day<br />(2). Burning/itching under my skin. It feels like ants or something. But scratching does no good at all.<br />(3) have trouble sleeping.<br />ThNks for sharing with me.</p>

Jump to this post

Yes. I think the itching is the worst. I had itching on my calves before I was diagnosis
With RA

REPLY
1 reply
Texas Freedom | @oregongirl | Jul 7, 2018
In reply to @oregongirl "Yes. I think the itching is the worst. I had itching on my calves before I..." + (show)
@oregongirl

Yes. I think the itching is the worst. I had itching on my calves before I was diagnosis
With RA

Jump to this post

Now I have cream Dr gave me and it works. I am I. Calif for weekend, when I get home will post med. I was itching Al over, my back was worse.

REPLY
virginiasenior | @virginiasenior | Jul 8, 2018
In reply to @johnbishop "Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will..." + (show)
@johnbishop

Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will join in and share information that may be helpful. I don't have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful - http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions - http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John

Jump to this post

Hi. I just wanted to share some information we found out about my sister. She had drug-induced lupus from Inderal. She stopped taking it but was not aware that it caused the drug-induced lupus and a year or so later went back on it or an equivalent beta blocker. She developed symptoms again and I did research and found out the connection and contacted the company. Their response was no one knows how the second exposure 2 one of them will workout. This was many years ago and the second exposure did go into full lupus. I guess I'm just wanting to warn you to stay away from similar drugs that gave you the drug-induced lupus. they may have more knowledge now than they did back then but it is possible to go into full lupus.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 9, 2018
In reply to @johnbishop "Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will..." + (show)
@johnbishop

Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will join in and share information that may be helpful. I don't have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful - http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions - http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John

Jump to this post

Hello @virginiasenior and welcome to Mayo Connect. I see that you are a relatively new member.

I appreciate your post regarding your sister's diagnosis. One of the great value from participating in Connect is that we all learn from each other. The sharing of your sister's story might certainly help someone else.

I hope your sister is managing this difficult disorder.

Teresa

REPLY
virginiasenior | @virginiasenior | Jul 10, 2018
In reply to @johnbishop "Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will..." + (show)
@johnbishop

Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will join in and share information that may be helpful. I don't have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful - http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions - http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John

Jump to this post

Thank you. My sister is 85 and did pretty good except for the joint pains and fatigue until she had a stroke a few years ago which seems as though the lupus has worsened. Her days and nightsv are switched. She stays up late and doesn't get up or at least going until 2 or 3 in the afternoon. She also has Hashimotos disease and has trouble keeping her thyroid regulated. But we are thankful that it was a slow progression for her.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 10, 2018
In reply to @johnbishop "Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will..." + (show)
@johnbishop

Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will join in and share information that may be helpful. I don't have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful - http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions - http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John

Jump to this post

@virginiasenior

Your sister is so fortunate to have you by her side, both physically and emotionally. I can tell by your words that you are really there for her and care about her.

Yes, any disease that slowly progresses is a good one. I have a slow growing form of cancer, neuroendocrine tumors. I've had three surgeries, the first in 2003 and the last in 2016. It is a blessing, if you will, to not have to face the large crises on a regular basis.

I look forward to hearing from you again, Virginia.

Teresa

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Oct 20, 2018
In reply to @jessicanpayne "I was diagnosised with Tumid lupus and sjogerns syndrome last year. Recently I have been having..." + (show)
@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.

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.