1. < Autoimmune Diseases

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

Posted by caroyates20000 @carolinely2000, Jul 20 9:37pm

I’ve been several years without a diagnosis… I consistently have an ANA of 1:320 or 1:640 (nuclear homogenous) with worsening symptoms, such as chronic muscle pain, difficulty swallowing, full body rashes, fevers, worsening vision and inflammation patches on my eyes and constant fatigue and arthritis in my joints. I am in my twenties. However, my bloodwork is pretty unremarkable. My rheumatologist says we wait for another annual check up for things to worsen in order to get answers. Any advice on what this could be AND what I should do?

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windyshores | @windyshores | Jul 21 4:21am

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.

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2 replies
celia16 | @celia16 | Jul 21 7:26am
In reply to @windyshores "This is a common situation in rheumatology. The ANA itself is not diagnostic for anything but..." + (show)
@windyshores

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.

Jump to this post

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.)

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seniormed | @seniormed | Jul 21 8:28am
In reply to @windyshores "This is a common situation in rheumatology. The ANA itself is not diagnostic for anything but..." + (show)
@windyshores

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.

Jump to this post

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.

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melissawolfe1981 | @melissawolfe1981 | Jul 21 9:42am

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🌻

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vickitaupo | @vickitaupo | Jul 21 4:15pm

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?

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 21 11:32pm
In reply to @vickitaupo "My ANA reading is 1:1280 and has been for 4 years. I have developed pancreatic cysts..." + (show)
@vickitaupo

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?

Jump to this post

@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?

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lkirnbauer | @lkirnbauer | Jul 22 8:43am

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

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slkanowitz | @slkanowitz | Jul 22 3:50pm

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.

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