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Diagnosis

My 13 yr old just diagnosed. Could someone help me?

  • By alaskanabbott

    I’ll try to be brief. 3 years ago I woke up with stiff hands and knees, which I assumed was from spending the previous day in the garden. For several months before I had ben having severe pain in my thumbs. Which I attributed to too much crocheting. Instead of getting better, my hands began swelling, my knees always hurt, and my hips began give me problems. I saw the dr, they ran all the blood tests and after waiting 9 months for a Rheumy appt, I was dx with RA and put on Plaquenil. I can honestly say, 3 years in and I don’t really know much about RA other than it sucks.
    Last year my daughter got braces. The doctor was mildly concerned with the jaw pain she had on a daily basis. She is a figure skater, does Jui Jitsu and Cross fit. BTW- I own a fitness center, and am a Personal Trainer and fitness instructor. We move our bodies A LOT! Last spring at the end of skating season, she complained about knee and hip pain, but after a few weeks of no skating it resolved. This January, her hips we causing pain 5-6 days a month, and she missed school from not being able to walk. You would think having RA I might think about that as a DX, right? Nope, I was sure it was from Cross Fit. and skating. Then the orthodontist did another bone scan on her jaw and told us to get her tested for RA. I still was in denial. I took her to 3 doctors since then, all 3 have dx’d her as having RA, and said we need to see the Pediatric Rheumy. Today her labs came in.
    RF IGG is 9 (RR Units: <=6 negative, >6 Positive)
    RF IGM is 15. (RR units: <=6 negative, >6 Positive)
    RF IGA.is 5 (RR: <=6 negative, >6 Positive)
    CCP- 16. (RR units: <=20 negative)
    Sjogrens was neg. as was everything else, except for a low thyroid T3.

    So my first question is what the heck is this reference range? My lab values have always been under 16 was negative. My 1st lab results was 12, so I was seri-negative. A year latter it was 16.
    Has anyone seen a reference range of over 6 is a positive? Is it because of her age?
    I will of course talk to the doctor, but we live in Alaska, there isn’t a Pediatric Rheumatologist here, so it will be a bit before we get any answers.

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  • By Richard Faust Moderator

    Hi alaskanabbott. Sorry to hear your daughter is having difficulties and having to undergo these tests. For your protection we cannot give medical advice over the internet and your doctor will have to explain the specifics of your daughter’s results. You are correct that Rheumatoid Factors of less than 15 are generally considered normal. For the Cyclic Citrullinated Peptide Antibody test (CCP) the range you cited is the standard – less than 20 considered negative.

    It is also important to remember that up to 30% of RA patients are seronegative. This article from one of our contributors goes into more detail on when the numbers don’t tell the whole story: https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/. Wishing you and your daughter the best and please keep us posted on how things are going. You are always welcome here for information and support. Richard (RheumatoidArthritis.net Team)

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  • By Tamara Haag Moderator

    Hi Alaskaanaabbot,

    I’m so sorry to hear that you and your daughter are going through this! It must be awful to see your daughter in pain and to not have ready access to a pediatric rheumatologist. I am thinking of you and your daughter, and I hope she can find some relief.

    As Richard stated, we are unable to give any medical advice over the internet. I certainly understand your interest in getting additional information about the results sooner rather than later. Is it possible the doctor that ordered the tests can speak with you about them over the phone? This webpage from the Arthritis Foundation doesn’t go into specifics of the numbers (again, due to the risks that can come from providing medical information via the internet), but it does explain what the different tests are looking for: https://www.arthritis.org/living-with-arthritis/tools-resources/lab-test-guide/.

    Also, I am seronegative, so I have never put much stock in my lab results, as they do not mirror my symptoms. I focus on my own symptoms (self-assessment) as well as my rheumatologist’s assessment of my swelling, tender joints, and images via ultrasound and x-ray. I wrote an article about the lack of helpfulness of standard labs for RA, and am including the link in case you find it to be of any interest: https://rheumatoidarthritis.net/living/testing-testing-1-2-3/.

    Please know that while we do have limits on what information we can provide, we are here for you. Please continue to reach out any time you feel so inclined.

    Wishing you and your daughter all the best,
    Tamara

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