ANA test follow up results - anyone else experience this

Posted by saw2019 @saw2019, Jun 26 1:32pm

Hello all

I received an abnormal ANA test result in February after meeting with a medical provider for fatigue, joint and muscle pain (among some other things that came and went, not sure they are related). I finally had an appointment with a rheumatologist this week who did further testing for ANA. My titer came back as 1:320 and a speckled pattern. All other blood work has come back normal. At this point I am waiting things out, meeting again with rheumatologist next month and she is having me try prednisone to see if my body reacts positively. My question is, has anyone else been in this situation? She told me there is potential I am in early stages of connective tissue disease but there is not enough to fully diagnose. I struggle with unknowns so just looking for others experiences. Thank you!

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Sue, Volunteer Mentor | @sueinmn | Jun 28 10:25am

In reply to @elisabeth007 "There are also autoimmune markers in our blood that show inflammation" + (show)

Yes there are a number of blood markers that show inflammation. But, not everyone forms those antibodies, even if they have RA or another autoimmune inflammatory condition. Then they are known to have "seronegative [condition]" - this is more common with some conditions than with others.
And, some people can have a number of inflammatory processes and no blood markers, decisions must be made based on symptoms. Doctors are not sure why this happens.

jw9 | @jw9 | Jun 29 9:36pm

@saw2019
When I was 30 I had a virus with high fever, rashes, swollen knees. This was followed by 6 weeks of absolute fatigue, I could do nothing. I almost lost my job as an RN. From that time on, I felt chronically ill. All those symptoms plus swollen glands, exhaustion, did I say exhaustion?(!) Okay, my life changed forever. I had a positive ANA, low complement levels. The next time a doctor ordered labs, maybe the ANA was negative.

What I learned is that no doctor believed I was ill without positive ANA. It wasn't until 15 years of that (and I never worked again) that I met a rheumatologist who told me there was now a test (Citrulline) that showed I already had bone erosion from rheumatoid arthritis. So, I got a diagnosis of Seronegative RA.

I have now been affirmed that I had Undifferentiated Connective Tissue Disease at first. I have autoimmune antibodies to thyroid; Hashimoto's Thyroiditis. I have Secondary Sjogrens Syndrome (but had the symptoms at 30). Autoimmune diagnosis seems to depend on labs until a certain point and voila! you are considered ill and not making it up in your head.

I went to a prestigious hospital medical center and they told me that all I needed was meditation. I looked at the doctors and told them , I have been meditating for 20 years and THEN I got ill.

I think I'm writing different things that come to mind because it is a very frustrating thing not to find answers, not to be taken seriously. I really hope things have improved for people today. I hope you find your healthiest life with autoimmune illness.

Terrez | @terrez | Jun 29 10:39pm

My daughter was diagnosed with lupus when she was in her 20’s.
Over the years she got worse and her Ana tests were high as well. She met with a new rheumatologist and she confirmed it was RA. I hope that’s not the case but maybe talk to your doctor about that possibility. Best wishes!

barbfe | @barbfe | Jun 30 10:15am

In reply to @jw9 "@saw2019 When I was 30 I had a virus with high fever, rashes, swollen knees. This..." + (show)

I was diagnosed 50 years ago with System Lupus. In the 50 years I've only had 4 positive ANA titer tests yet I've had many flareups during that time - some very severe. I don't see medical doctors anymore - not for 20 years. I do holistic, naturopathic and Asian medicine - it has saved my life. I went to the Mayo Clinic in 1998, and after 2 weeks of testing, etc. they told me to stay away from the medical community unless it was an emergency, they told me to go all holistic, eat clean and take good care of myself. They said the doctors would kill me trying to save me. I took their advice, and while I have occasional flareups, they are few and far between. I eat all organic, do liver and kidney cleanses every 90 days and take supplements. 2 years ago I ended up in the ER with high blood pressure from a flareup - the doctor insisted I had kidney damage because first of all, no one lives 50 years with lupus, and second of all since I have there is organ damage. I made him run the tests while I was there, and he came back in and said he couldn't believe that all my tests were normal - he called them beautiful. There's a lot to be said for holistic- I'm living proof. I hope this helps.

jw9 | @jw9 | Jun 30 10:54am

In reply to @suzieq1980 "I am in the same boat. I have a moderately positive ANA 1:180 with both speckled..." + (show)

@suzieq1980
It seems that you and I have had a very similar experience with being ill with much the same symptoms for 15 years and being dismissed by rheumatology. I love "Hang in there, you're not alone." (!!) Because while we all go through this individually, there are so many women who are not finding good healthcare for autoimmune illness.
I have commented on my experience here (jwj9) but wanted you to know that I take plaquenil without side effects. It seems to especially help with Sjogrens Syndrome; dry eyes, dry mouth. I keep up with eye exams too.
You are the only person who I've heard mention "random fevers"; an ongoing part of my life for many years.
I hope you can find a true human of a rheunatologist! I know there's a shortage of them, but I have found two doctors that are not burned out, have empathy, spend time with me. My current doctor told me , Let me know if there's anything I can help you with. And I trust him. What I have found is the younger the doctor, the more they are aware of what's new with treatments and also, they seem to be more understanding of a patient's needs.
Thank you for your comments!

suecutuli | @suecutuli | Jul 1 10:59am

In reply to @jw9 "@saw2019 When I was 30 I had a virus with high fever, rashes, swollen knees. This..." + (show)

YES it is beyond frustrating!

jeannef2025 | @jeannef2025 | Jul 2 10:12am

In reply to @jw9 "@saw2019 When I was 30 I had a virus with high fever, rashes, swollen knees. This..." + (show)

Clarifying the test referenced - anti-citrulline antibody

moorethrpy | @moorethrpy | Jul 3 11:36am

In reply to @jw9 "@suzieq1980 It seems that you and I have had a very similar experience with being ill..." + (show)

Be aware of Plaquinil. It can cause neuropathy. I stopped at the advice of my Columbia U neurologist. I took originally due to vague diagnosis of Lupus (had no symptoms..just antibodies). Took for years. Now have normal labs except for ANA.. GOod luck...Auto immune is a bear to live with. I also experience Raynaud's in cold temps.

missy245 | @missy245 | Jul 6 8:08pm

No one has mentioned the two tesst that show inflammation, CRP and Sed rate, so wondering if anyone who is having difficulty getting a diagnosis has had either of these and if so what what were the results.
These were the first two tests that fairly quickly resulted in my initial diagnosis of "inflammatory arthritis" 25 years ago.

Back history, I was on Zocor for high cholesterol and I wanted to get off of it, so I asked my internist to run a high sensitivity CRP to check for inflammation because I reasoned that since inflammation played a part in having a heart attack, if my test showed none, he would agree for me to get off of Zocor. He told me the high sensitivity CRP was not yet available, but he would do a regular one.
It was through the roof HIGH and so then he did an RA factor (also through the roof high) and ANA(negative.) Anti-CPP was not yet available back then. I was referred to a Rheumatologist who diagnosed "inflammatory arthritis " after running many more tests. I started Plaquenil and within 2 weeks the very mild symptoms I was having in my wrists and hands were gone. About 6 months after that diagnosis when the anti-ccp became available and it was also high , he diagnosed RA.
RA factor is not a great test for diagnosing RA, since it can be high for other reasons. I think without elevated CRP and Sed rate, a Rheumatologist might be reluctant to diagnose an autoimmune disease, even with some symptoms.

Shortly after my diagnosis, my Mother was diagnosed with RA at age 79. And after about 10 years, my older brother was diagnosed with RA.
Last year, my daughter became very symptomatic , her CRP was very high as was her Sed rate. Given her strong family history, and after many more test,she was diagnosed sero-negative RA since neither her RA factor or Anti-ccp were positive.