Autoimmune disease possible with positive ANA and ok bloodwork?

You have a positive ANA but you don't apparently have test results that make for a clear diagnosis. Many patients seeing rheumatolgy are monitored and watched but have to "wait" for a label. If I were you I would ask that some of those skin symptoms get biopsied.

The rheumatologist could give you Plaquenil (hydroxychloroquine) but there are (rare) risks. Other treatments would be steroids, anti-inflammatories, maybe immune suppressants. There are no magic answers in my experience and the treatments are rough.

Have you considered seeing a functional medicine/integrative medicine doctor or naturopath? They tend to look at the whole system and may have some suggestions. For instance, curcumin. Keep us posted!

Man, that sounds very frustrating. Does anyone else in your family have similar symptoms? Are taking any meds?

I’m going through something similar. I have been diagnosed with post covid syndrome and have some of the symptoms you describe. I also have positive ANA. Awaiting Rheumatologist visit. It’s got me concerned, because autoimmune runs in my family. I’m trying to focus on the positive things about my health, which are growing since last year. And, hope things aren’t so bad. Talk therapy helps a lot.

I hope you get some answers. I’m also considering consulting with someone in Functional Medicine.

@carolinely2000 I’m so sorry that you’re having such a bad time, but Welcome to Mayo Clinic Connect! Trying to find the answers to possible autoimmune is frequently like looking for a needle in a haystack. I sort of knew I was getting one when I got sick because my older sister already had one. But that didn’t make it any easier, I still had to argue with my PCP. My husband finally called the university hospital in a city near us, They actually knew what I had and started treatment right away. I encourage you to go to a comprehensive medical center or a university/teaching hospital. The doctors there are a step above and know more of the unusual diseases. But don’t give up, just keep up the battle!
In the meantime,stay out of the sun or use high spf (?) sunscreen, take care of your eyes—have you seen an opthamologist ? Some diseases can be diagnosed by studying the eye. Don’t give up. Just take care of yourself while you continue searching.

Thank you for this! I have wondered about a functional medicine doctor but haven’t known where to start. I would be interested in trying absolutely anything that might help!

I have a relatively low (but positive) ANA and some basic inflammation markers present. Other than that, bloodwork is pretty standard. So frustrating when you know you feel poorly but can’t figure out why.

@carolinely2000
You may have long COVID causing some of your symptoms since they are new since having the virus on 2020. Did you get the vaccinations and boosters?

I had the original vaccine but no boosters!

@carolinely2000
I had Covid vaccines in 2021 and then Covid infection in 2022 (may have actually had Covid early in 2019 because symptoms similar to initial outbreak). I do think Covid and the vaccines have caused long term negative impacts to people’s health. There is more research coming out and people are sharing more of their vaccine injury stories.

It’s so frustrating and makes you feel a little crazy. My family does have a history of autoimmune, which makes me more concerned. At this point, I’m taking Cerebrex for muscular / joint pain, and restasis for my eyes. I’ve taken plaquenil in the past, but have recently been taken off of that.

So badly want some answers as to why it’s happening… or why I feel so bad but have relatively clear bloodwork!

I’ll second the academic center referral. There are so many rare (& not so rare) diseases that most docs don’t want to or don’t know to test for. Theres also seronegative disease that makes treatment hard to get covered or creates liability most average docs don’t want to take on but the truth is most of these blood tests aren’t 100% accurate. Docs at an academic center will have more ability to test & work outside the box. The tests that finally illuminated my condition after years and years of watching and waiting and suffering, came through a Neuroimmunologist not a rheumatologist. I had; blood tests for all three antiphospholipid syndrome antibodies, a paraneoplastic panel blood test, a stem to stern mri, a lumbar puncture & the skin biopsy for small fiber neuropathy. I still struggle with dx confusion, causation, and getting treatment bc docs never seem to agree, but at least I have a few answers and docs willing to try something! I wouldn’t wait to long if you’re not at an academic center already. It’s really important to catch some conditions early. Trust yourself & your body!

I had a positive ANA but otherwise decent bloodwork and it turned out that I had lupus. It took quite a while -- years -- for me to get properly diagnosed. I wish you better luck than I had.