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Negative tests for rheumatoid arthritis, positive ANA tests, and terri

Posted by krystyna55 @krystyna55, Jan 28 10:31pm

For the past 3 months, I've been experiencing severe pain in both knees, on the inner side. It started suddenly. The pain is burning and throbbing, the same in both knees, and radiates down to my calves. The pain intensifies, especially at night. I can't fall asleep because of the pain, or I wake up with pain at 3 AM. Even when I rest during the day, I still feel pain. During the day, it's much better. I can walk and bend my knees without mechanical pain. I feel a constant burning sensation and tightness under my knees, and my calves feel heavy, but this doesn't hinder my walking. My RF is < 10, CCP < 16, Erythrocyte sedimentation rate is: 1, CRP is: 0.3. Doctors say my rheumatism test results are good. However, my ANA Screen, IFA is positive, ANA PATTERN: NUCLEAR, HOMOGENEOUS, ANA TITER Value 1:320. I haven't slept properly for 3 months. The pain feels like someone is burning me with fire. Has anyone encountered a similar problem? Please help.

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fairn | @fairn | Jan 29 8:52am

Your ANA indicates some type of autoimmune process going on. Because autoimmune tests are known to not always pick up existing RA, there is a category now being used by Rheumatologists that's called 'seronegative' RA. Many people have RA and other autoimmune syndromes (Sjogren's, Lupus) that do not test positive unless the damage is quite advanced and sometimes not even then. A good Rheumatologist will look at your clinical symptoms and your +ANA and treat the inflammation and other symptoms as well as run additional tests (such as Early Sjogren's Profile Panel, genetic tests for things like Ankylosing Spondylitis) and do scans of your joints; he won't rely solely on test results. Listen to your body, the +ANA is a marker for many things and your body is telling you that there is some type of inflammation and pain going on.

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cptrayes | @cptrayes | Jan 29 9:04am

If by CCP you mean anti CCP then in the UK, a score of over 7 is classed as abnormal, 7-10 is indicative of possible rheumatoid arthritis and over 10 would give you an immediate referral to Rheumatology with a rheumatoid arthritis diagnosis.

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jeanninec | @jeanninec | Jan 29 9:24am
In reply to @fairn "Your ANA indicates some type of autoimmune process going on. Because autoimmune tests are known to..." + (show)
Profile picture for fairn @fairn

Your ANA indicates some type of autoimmune process going on. Because autoimmune tests are known to not always pick up existing RA, there is a category now being used by Rheumatologists that's called 'seronegative' RA. Many people have RA and other autoimmune syndromes (Sjogren's, Lupus) that do not test positive unless the damage is quite advanced and sometimes not even then. A good Rheumatologist will look at your clinical symptoms and your +ANA and treat the inflammation and other symptoms as well as run additional tests (such as Early Sjogren's Profile Panel, genetic tests for things like Ankylosing Spondylitis) and do scans of your joints; he won't rely solely on test results. Listen to your body, the +ANA is a marker for many things and your body is telling you that there is some type of inflammation and pain going on.

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@fairn ask about the AVISE test.

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krystyna55 | @krystyna55 | Jan 29 2:51pm
In reply to @cptrayes "If by CCP you mean anti CCP then in the UK, a score of over 7..." + (show)
Profile picture for cptrayes @cptrayes

If by CCP you mean anti CCP then in the UK, a score of over 7 is classed as abnormal, 7-10 is indicative of possible rheumatoid arthritis and over 10 would give you an immediate referral to Rheumatology with a rheumatoid arthritis diagnosis.

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@cptrayes Thanks

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 29 10:53pm

@krystyna Welcome to Mayo Clinic Connect! As you can see, we have a wonderful group of members in this discussion. And they are always available to help!

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susanlf | @susanlf | Jan 30 10:32am

I have found different labs produce different benchmarks for blood work results. I always have to check the parameters before making any test results conclusions. I am the perfect poster child for PMR but my labs are within range. I have been in excruciating pain since my shingle shot on 6/11/24. My left shoulder was replaced on 10/29/25. With my right shoulder to follow. Both rheumatologists insist I aged into this which is absolutely false. I am sooooo very thankful for all of you and your comments. Each time I learn about a lab test or medication I add it to my list and ask my doctors. We must stay strong and keep pushing for the results we need to get us through and into better health! Bless you all!

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nelbahoney | @nelbahoney | Jan 30 12:56pm

I want a diagnosis. Test after test and having an ED nurse suggest mental health. Well, therapy can help with the anxiety sometimes but You are still sick and don’t know why. Most medication, treatments just keep me barely functioning. I love encouragement and Susan said stay strong and keep pushing for better health and with the help of Jesus, that’s what I am going to do. Thank you.

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susanlf | @susanlf | Jan 31 11:05am

Amen to that! Please share any encouraging progress you get!

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prestol | @prestol | Feb 2 12:09pm

I also had a positive ANA, but was negative on the RF and anti-CCP tests. I was diagnosed with PMR, but my rheumatologist continued to suspect seronegative RA. She ordered an advanced panel called seronegRAdx4 (this was developed by LabCor) and sure enough I was positive on two of the tests. I am now taking both methotrexate and Plaquenil with good results. Anyone else struggling to get a diagnosis might want to talk with your rheumatologist about this blood test.

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