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

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jumpingjac | @jumpingjac | Jul 9, 2023

Hi everyone, I am new to this group. I have been diagnosed with Tumid Lupus around November 2021…Started CellCept last June….When i was first diagnosed, I also suffered from hair loss. It is very hard to explain to my family that i can’t sit outdoors or even just bringing the trash out, requires me putting on my jacket and cap..even my spouse don’t understand…he shrugged off saying 5 mins in the sun wont hurt me. I feel very alone….i am struggling to get my condition in check…..i am wondering if anyone has successfully get their lupus into remission?? How long after getting a flare up, does it take for the rashes to go away? And if you also suffer hair loss, how long does it take to get back to before? I am in Texas……trying to avoid sun is a lot of work…especially with 2 tweens. I appreciate any advice.
Thank you.

pennelayton | @pennelayton | Jul 10, 2023

You’re not alone in this struggle. If your hair loss is significant; they have great caps and hats with hair that you can wear that would help with light exposure and hair loss. Print off information regarding your situation and have your close ones read it so they can understand more. If you can find a local support group probably for generalized lupus that may help. It’s a journey.

llklem | @llklem | Feb 26 3:42pm

I was diagnosed with Tumid Lupus- told to wear sunscreen and stay out of the sun- that's it but I know my body is feeling something more than just this horrendous itch. My ANA Is negative. I feel like i Have more symptoms but I'm not getting answers to other body tingling, itch, swelling I get. Anyone have any success with a diagnosis that might explain the negative ANA ?

Becky, Volunteer Mentor | @becsbuddy | Feb 26 7:11pm

In reply to @llklem "I was diagnosed with Tumid Lupus- told to wear sunscreen and stay out of the sun-..." + (show)

@llklem That’s really terrible that you weren’t told very much about timid lupus. I found these sites, one from Mayo Clinic, and the other from the National institutes of health. The article from Mayo explains the basics of lupus and NIH (very scholarly) talks about timid lupus.
https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
https://www.ncbi.nlm.nih.gov/books/NBK482515/
Are you seeing a rheumatologist for the lupus? If not, ask your PCP for a referral. You need some more answers!
Call tomorrow and let me know what you learn!

llklem | @llklem | Feb 26 7:40pm

In reply to @becsbuddy "@llklem That’s really terrible that you weren’t told very much about timid lupus. I found these..." + (show)

Thank you. I was told it’s only dermatological that other symptoms shouldn’t arise. My rheumatologist told my doctor that there’s nothing to indicate something more. I don’t understand fully. I was hoping to hear if someone else has had negative blood work with symptoms. Txs in advance!

reets70 | @reets70 | Feb 27 8:36am

In reply to @llklem "Thank you. I was told it’s only dermatological that other symptoms shouldn’t arise. My rheumatologist told..." + (show)

My ANA is negative also, and yet I have many many symptoms. I’ve had them for years and I’m on Hydroxychloroquine for arthritis, prednisone for PMR, pain meds, etc. most times I feel fine, but there are times when my joints pain and swell.

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