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

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

Texas Freedom | @oregongirl | Aug 10, 2018
In reply to @lakelife1 "Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out..." + (show)
@lakelife1

Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication... Please share your knowledge of Tumid Lupus.

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I am so sick today. Unfortunately, I have problems with my medicine for RA. Methotrexate. But I must hang in there. Couple of weeks I will feel better. Where's my Marijuana

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lioness | @lioness | Aug 10, 2018
In reply to @lakelife1 "Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out..." + (show)
@lakelife1

Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication... Please share your knowledge of Tumid Lupus.

Jump to this post

@oregongirl go to IRED.com They have a whole list of CBD and others maybe theres something there for you I have the cream it hols of the pain longer then otc.

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Texas Freedom | @oregongirl | Aug 10, 2018
In reply to @lakelife1 "Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out..." + (show)
@lakelife1

Hi Everyone, I was recently diagnosed with Tumid Lupus, and having a hard time finding out information. All my doctor has really told me is to stay out of the sun and take Plaquenil. I am hesitate to start this medication... Please share your knowledge of Tumid Lupus.

Jump to this post

Ok thanks

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 2, 2019
In reply to @billjan "I have had tumid lupus for about 12 years. I have lived with the small red..." + (show)
@billjan

I have had tumid lupus for about 12 years. I have lived with the small red skin spots after not being able to find a treatment for the condition. My problem is that in the last two weeks my small red spots have turned into raised large red spots. They is more itch with these raised spots. Has anyone experienced this condition? I also have polymyalgia rheumatica for which I take 5 mg/day prednisone. Have tried to decrease to 4 mg/day but muscle aches return.

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Hi @billjan -- There is another discussion by the same name where your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your dicussion here where you can meet others who are discussing tumid lupus.

> Groups > Autoimmune Diseases > Tumid Lupus
-- https://connect.mayoclinic.org/discussion/tumid-lupus/

Have you discussed the new symptoms with your doctor?

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billjan | @billjan | Aug 2, 2019
In reply to @billjan "I have had tumid lupus for about 12 years. I have lived with the small red..." + (show)
@billjan

I have had tumid lupus for about 12 years. I have lived with the small red skin spots after not being able to find a treatment for the condition. My problem is that in the last two weeks my small red spots have turned into raised large red spots. They is more itch with these raised spots. Has anyone experienced this condition? I also have polymyalgia rheumatica for which I take 5 mg/day prednisone. Have tried to decrease to 4 mg/day but muscle aches return.

Jump to this post

Yes you an move to tumid lupus discussion. I have and appointment coming up with my primary care provider and will bring it up with her.

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billjan | @billjan | Aug 2, 2019

I have had tumid lupus for about 12 years. I have lived with the small red skin spots after not being able to find a treatment for the condition. My problem is that in the last two weeks my small red spots have turned into raised large red spots. They is more itch with these raised spots. Has anyone experienced this condition? I also have polymyalgia rheumatica for which I take 5 mg/day prednisone. Have tried to decrease to 4 mg/day but muscle aches return.

REPLY
2 replies
Ethan McConkey, Moderator | @ethanmcconkey | Aug 2, 2019

Hi @billjan you may have noticed I moved your post to this existing discussion on Tumid Lupus per the suggestion of @johnbishop so that you can connect with others will similar experience. Simply click VIEW & REPLY in your email notification to get to your post.

That must be frustrating to be unable to find a treatment for your red spots. I would like to tag fellow Connect members @oregongirl and @paulamiddleton as they may be able to offer you support.

What treatments have you tried so far?

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mtblack | @mtblack | May 4, 2021

I was diagnosed with Tumid Lupus in April. Initially my first flare (March) was thought to be some type of contact dermatitis because it was on my legs. When the second flare up hit, I pushed for more answers. My dermatologist did a biopsy and was shocked when my results indicated this diagnosis. I had a flare up on my neck and was prescribed prednisone. The amount I was told to take was way more than I could handle and had to stop. Now I have another flare up, same as my first and second on my legs, and back to using a topical steroid. They seem to be happening every 30 or so days. Does anyone else seem to have cyclical flare ups of their rashes?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 4, 2021
In reply to @mtblack "I was diagnosed with Tumid Lupus in April. Initially my first flare (March) was thought to..." + (show)
@mtblack

I was diagnosed with Tumid Lupus in April. Initially my first flare (March) was thought to be some type of contact dermatitis because it was on my legs. When the second flare up hit, I pushed for more answers. My dermatologist did a biopsy and was shocked when my results indicated this diagnosis. I had a flare up on my neck and was prescribed prednisone. The amount I was told to take was way more than I could handle and had to stop. Now I have another flare up, same as my first and second on my legs, and back to using a topical steroid. They seem to be happening every 30 or so days. Does anyone else seem to have cyclical flare ups of their rashes?

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Hello @mtblack, Welcome to Mayo Clinic Connect. I know it's difficult trying to find out what is causing the flare ups with Tumid Lupus. @mnkennedy, @pdesar65, @efreeman, @billjan, @mantramagic @lanakaymedina and @paulamiddleton may have some thoughts or suggestions to share with you. While we wait to hear from other members you might find the following information on the Lupus.Org site helpful.

Common triggers for lupus: https://www.lupus.org/resources/common-triggers-for-lupus

Did your dermatologist have any thoughts on the flare ups happening every 30 or so days?

REPLY
mtblack | @mtblack | May 4, 2021
In reply to @mtblack "I was diagnosed with Tumid Lupus in April. Initially my first flare (March) was thought to..." + (show)
@mtblack

I was diagnosed with Tumid Lupus in April. Initially my first flare (March) was thought to be some type of contact dermatitis because it was on my legs. When the second flare up hit, I pushed for more answers. My dermatologist did a biopsy and was shocked when my results indicated this diagnosis. I had a flare up on my neck and was prescribed prednisone. The amount I was told to take was way more than I could handle and had to stop. Now I have another flare up, same as my first and second on my legs, and back to using a topical steroid. They seem to be happening every 30 or so days. Does anyone else seem to have cyclical flare ups of their rashes?

Jump to this post

I haven’t talked to the dermatologist yet. I did mention after my second flare up and she didn’t think it was related to anything. Maybe this time will be different?

Thanks for the reply to my post. It’s nice to know there is support out there.

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