Does anyone have Tumid Lupus?
I’m wondering if anyone with Lupus (SLE) has had skin mottling (Livedo Reticularis). I’m being tested for autoimmune diseases and cancers. I have a mottling rash (violet/reddish) on my chest and arms. It came up literally overnight! I have elevated liver enzymes and tested positive for ANA, specifically AMA reticular. My first lupus test came back negative but the doctor ordered a more specific lupus anticoagulant test. My skin biopsies are scheduled for this week. I have this skin issue and fatigue. I don’t have joint issues. I’m wondering if anyone has any similar experiences or advice. I’m new to all of this.
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@kaydee01 Welcome to Mayo Ciinic Connect! It's concerning,no doubt, to have this mottling issue.
What I have found with Systemic Lupus, is what many have said, that it is indeed a "constellation" disorder. That is, what some experience as symptoms, may never occur for others. Back in 1988, when I was diagnosed, there was a long drawn out testing period. The results of each test determined what the next step would be. I never did take any medication. For years, they concluded the excessive protein in my urine was a result of the lupus. Only in late 2014, did my nephrologist determine that he thought there was something else going on. I'll always be grateful to him for looking outside that box they had placed me in! The diagnosis of an ultra-rare kidney disease took everyone by surprise!
I experience the mottling issue you speak of, along with joint pain, fatigue, and extreme sensitivity to UV light. But I also have other health issues that also include those symptoms, so it is very difficult to pin them on anything specific.
Please let me know what the skin biopsies show. And, soldier on! Make each day count, eat healthy, exercise moderately, practice stress-reducing activities.
Thanks so much for replying. I couldn’t see much from anyone with the mottling. It’s good to know others experience it. I, too, have issues with the sun. If I sit out in the sun for any length of time, I get a severe rash that looks like a heat rash. This has been ongoing for 20 years. I also had Alopecia Areata for a while five years ago. I’ve since learned that both could be caused by Lupus. Honestly, I didn’t think I could’ve have it that long and not been diagnosed. From your post, I feel different about it now. I guess sometimes it takes a long time for accurate diagnosis. Hopefully, the biopsies will give me answers.
I have had lupus since 2017, that I know of. Felt really tires for a year..then went to Mayo Clinic, Rochester. Diagnosed with SLE. Been or Plaquenil ever since, 200 mg twice daily. Heads up if you do have Lupus and, placed on this med, you will need to use a sun block lotion in the summer time on all exposed areas. You can break out in blistering and sunburn.
Welcome to connect! Excellent boards with tons of information. Very caring people on these boards.
Good luck with your tests! Keep us updated! Pat
Welcome @kaydee01 !
If you don’t end up with a lupus diagnosis- check out the posts under “undifferentiated connective tissue disease”- there are a lot of us out there who have something-autoimmune-but-not-quite-lupus.
As for the livedo reticularis in particular… I honestly don’t know if I have that or if my skin is basically just clear. I am excessively fair skinned and think I’ve always had the purplish reticular pattern to my skin, especially when cold. So, I didn’t mention it to my rheumatologist because I think it always been there. But… I do know that it is a legit symptom of connective tissue disease.
Thanks. I’ll do that.
All of my life, I had a form of Livedo but happened when I was cold and it was gone upon warming. This newest Livedo is always there in warm or cold and it is much more pronounced. Apparently, it’s a symptom of many autoimmune and vascular disorders. My biopsy is tomorrow , so that might shed some light on it.
Fingers crossed for you!
Thanks so much!
I had my biopsy and results will take a few weeks. However, the dermatologist strongly believes that it is Tumid Lupus Erythematosus. Does anyone have experience with this type of Lupus. I think that it’s pretty rare.
Please let us know what you found out. If you feel like sharing.
Tumid Lupus Erythematosus Is pretty rare and there’s little research on it. If the biopsy confirms his suspicions, I will be put on Plaquenil.