ANA of 1:320, chronic symptoms… anticlimactic bloodwork?

This is a common situation in rheumatology. The ANA itself is not diagnostic for anything but indicates a need for you to be monitored. In my experience rheumatologists are especially watching for damage to organs.

Can you have the skin rashes biopsied? Swallow test? Are you documenting fevers?

The medication options offered by rheumatology may or may not be something you seek. Plaquenil is often first (hydroxychloroquine). Steroids, immune suppressants, others...

In the meantime, you could see a functional or integrative medicine doctor, or naturopath. Supplements such as curcumin and PEA luteolin can help inflammation. PT, massage and tai chi can all help. For now, maybe try to address each symptom.

It takes a long time for a diagnosis to become clear in rheumatology and I think it is often less about the label and more about what it is doing to the body.

That’s quite helpful. I have similar numbers as Carolinely2000, except my symptoms are not typical. No fatigue, no muscle or joint pain, skin pretty good right now….I hope my Neurologist can help me in discussion with my Rheumatologist. ENT says I should discuss my taste issue with Rheumatologist, (Smell has recently improved a lot.)

If you see another rheumatologist for a second opinion they well might consider you to have lupus and treat you more aggressively.
You are suffering enough symptoms to deserve further workup. It might help to see a university med center based dermatologist for testing and input to your rheumatologist.

Get a second opinion. That would be the best thing to do & also keep a journal of all the symptoms you have along with anything you notice that causes the symptoms to flare up/worsen. Prayers to you🌻

My ANA reading is 1:1280 and has been for 4 years. I have developed pancreatic cysts and liver lesions. Gastrologist was alarmed at the high reading but rheumatologist is not. Could these be related?

@vickitaupo Welcome to Mayo Clinic Connect! I see from your profile that you got on MCC several months ago but just now made a comment! I hope you’re encouraged to make yourself known more frequently. Did the gastroenterologist talk to you about what he would do with a high ANA?

Your doctor is an idiot for making you wait a year until you feel worse! That’s just crazy! Find a new doctor!

To vickitaupo, yes, as you can have autoimmune pancreatitis that produces cysts and autoimmune hepatitis that causes liver lesions. Your gastroenterologist is right to be concerned! There are specific tests that can be done to determine whether the pancreatic cysts and liver lesions are a result of AI process. I would question your rheumatologist’s cavalier attitude about your high ANA. It would be so helpful if our specialists talked to one another! Why doesn’t this happen? We need a team approach to these complex problems.

Well, im 61 and lived with autoimmune disease. I have PBC and Bronchiectasis, along with AT3 deficiency 3 tia’s Barrett’s disease. (Not cancer) Esphogeal scleroderma. Along with many other things. The entire problem with me is the only thing I suffer with is chronic pain and extreme fatigue. Refuse to diagnose me with anything. Just because of my markers. It’s crazy how one has to suffer with no answers. And when I go to new Drs all I hear is did anyone ever tell you .. if you have LUPUS! Imagine that. So until they call it no meds.! It’s never ending. Good luck with your stuff and feel better!

I am dealing with some overlap of what you're dealing with. Almost always 320 or 640 titer for a decade now, ongoing issues that flare up (muscle weakness, eye strain, difficulties and pain in my esophagus, gastric pain, random pains and muscle spasms all over, brain fog, extreme fatigue (ugh this week has been horrible), urinary and prostate issues, constant double vision in my upper range, difficulty with deep breaths, burning mouth syndrome, and low grade fevers.). I've been to dozens of doctors over the years, had what feels like thousands of workups, CTs and MRIs to cover nearly my entire body, and yet nothing but the ANA. The only test I've ever had come back almost negative was ferritin, which was at the very minimum level. My last rheumy appt, she believes it is sjogren's, although both bloodtests came back negative (apparently that happens in 40% of cases). So, in short, I feel for you. God bless you, and I hope you get a diagnosis soon. We're all in this together.