Connect
ANA negative for systemic Lupus
I was diagnosed with discoid lupus in 2022 following a biopsy of a bald, disc-shaped spot on my scalp. Since then, I’ve noticed increased sensitivity to the sun, and I bruise and burn easily. However, I haven’t experienced any other significant symptoms. I received steroid injections in the affected area, but they caused indentations in my scalp without any noticeable hair regrowth.
Could this mean that I don’t have discoid lupus since my ANA #'s were all negative or are they two different illnesses/diagnoses? I’m still waiting for my doctor to follow up, but it’s been over a month without a response.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
What kind of reaction to the sun do you have?
I have a lupus diagnosis with positive sometimes high ANA but few symptoms that can be traced to it other than sun sensitivity. It affects my lungs, sore throat, headache, diarrhea, joint pain.
Did the biopsy say definite lupus or was it tentative and/or mention other possibilities?
-
Like -
Helpful -
Hug
1 Reaction@jayrob624 I’, just wondering what speciality of doctor you are seeing. Is it a rheumatologist? Autoimmune diseases are very hard to diagnose and lab values don’t always help.
I’m sure you have seen Mayo Clinic’s information on lupus, but here it is again!
https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
If your doctor is not being responsive to you, then you might find a new one. Go back to your PCP and ask for another referral, this time to a rheumatologist . You sound like you stay on top of things so get on top of this!
What is the one concern that you would ask your doctor about?
-
Like -
Helpful -
Hug
1 ReactionHi @becsbuddy The last doctor I saw was a rheumatologist. He said i do not have Lupus. It was my dermatologist who did a biopsy on my scalp and determined it was discoid lupus. Should I see an autoimmune Dr too?
-
Like -
Helpful -
Hug
1 ReactionI was told to avoid the sun. My skin forms these red blotches. When I use to get flu shots and the Covid shot, the mark would cause a red raised circle at the injection site. It took years for it to go away. The other symptoms you mentioned are normal for me; diarrhea, joint pain and lung issues. The biopsy indicated "Discoid" lupus and not systemic Lupus.
-
Like -
Helpful -
Hug
1 Reaction@jayrob624 Yes, I think you should get a rheumatologist. They are considered the autoimmune specialist. Put them on hold for now. Are you near a comprehensive medical center or university teaching hospital? They are the best for doctors who “like all the foreign stuff.” Near really means in your state. They can do all the diagnosing and treatment planning; send details to your local doctor. That’s what I do; see my doctor and all her staff maybe every 3-6 months. I get all the ‘hands-on’ care by the local doctors. Luckily, everyone’s computer can talk to each other.
Does that sound reasonable for now?