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  • By TrinketGirl


    I’m new here, and just switched Rheumatologists last week. I switched because I clearly do not just have Fibromyalgia. It started with fatigue and aches/pain….yes, but now? No way.

    In the last year I developed POTS (Postural Orthostatic Tachycardia Syndrome), and it was confirmed a couple months ago with a Tilt-table. (I have type 2, Hyper POTS) Cardiologist said this is what you have, nothing we can do.
    I disagreed, and did my own research while I wait for the only specialist in my area (3 hours away, with 8 month wait-list!). It’s highly linked to autoimmune.

    I thought Sjogrens, with my recent eye problems (inflammation, dry dry dry eyes, and recurrent infections), and constant dry mouth.

    My new Rheumy wanted to be thorough (CRP was usually always high, but previous Rheumy shrugged it off as nothing, tested RF (negative), ANA (negative) and called it a day, Fibro) and tested ANA (Waiting still on that, but probably negative again), RF again (Negative), CRP (I’m not in a flare right now, for once, it’s in normal range!)

    I was getting pretty disheartened again until I looked at my CCP test, POSITIVE it says! Not expected… I have joint swelling (even when not in a flare like now, my knuckles are puffy, Rheumy pointed it out, got xrays soon too), but I still thought it was Sjogrens (it probably still is, need a biopsy!)

    BUT CCP is low positive, 20.8 U, (reference is <3 U, but online it says 20-39 is low positive)…. Is it early RA? Is it a fluke? How accurate is this test?

    I see him again in 3 weeks, and I’m scared that with low CRP and ESR rate right now (I told him, the past month and a half, I’m in what I call a cooling off period, less symptoms).

    Symptoms for me are: Muscle aches and pain everywhere, nerve pain in my legs only (I think SFN!), POTS symptoms, Raynaud’s (newish, I showed pics to the Rheumy and that’s what he said), Joint swelling (started 5 months ago, very recent), joint pain (goes back longer, about a year), I get tingling and numbness occasionally in my arms mostly, dry eyes, dry mouth, constipation (life-long, slow gut), eye infections (bacterial, not viral), eye inflammation (whites of the eyes get red, painful, blurry vision and light sensitive), dry cough (no infection, my throat looks dry and irritated) comes and goes, Mouth sores (cankers, from dry mouth….I think), dry sinuses (also inflamed), low-grade fever (but again, no infection!)

    Does CCP mean much, could it still be something else? Or RA + something else? 🙁 I just want to know! I’m tired and sick (literally and figuratively) of fighting, I just want to KNOW.

  • By Mariah Z. Leach Moderator

    Hi TrinketGirl~

    It can be very frustrating to deal with multiple autoimmune issues – especially since so many of the symptoms can be overlapping. To make matters more complicated, there is no single test that can confirm a diagnosis of RA. Instead RA is diagnosed by the combination of a variety of tests, a medical history, and a physical exam. The best thing you can do is continue working with a specialist and pushing for answers. Be as honest as you can about your symptoms – and your frustrations. Remember that your doctor is supposed to be part of your team, and if he/she isn’t making you feel supported it may be time to find a new doctor.

    Best of luck to you!
    ~Mariah~ (Site Moderator)

  • By mp44sturm

    I understand that the CCP test is very specific for rheumatoid arthritis.

    Not very sensitive so it might not show up positive for someone with RA, but if the anti-CCP is positive, it is certain that you have RA.

    (Did some reading about it from the arthritis foundation website and from the mayo clinic website using the search terms “ccp arthritis)

  • By RhuemerGirl64

    Hi Trinketgirl!

    I truly understand all about the maybe. I have had a few joint aches and pains over the past year but in July my body just went all out frontal assault on itself. Started with Subacute Thyroiditis. Low grades fevers soon followed with throbbing toothache feeling joints as well as horrible nerve misfirings and zaps… I had the brain function of someone blinded by brainfog… at one point they even thought MS… but scan came back clean… first they said it was all due to my thyroid but the thyroid went on to mend. Had a very high Sed rate at the start as well as ALK. My non aa GFR has steadily decrease from 82 which is mild kidney issues to a 58 on my last test which is now considered moderate. I don’t have the typical swelling viewable to the naked eye. ANA came back negative except my ssDNA came back with markers for RA. My RF was originally negative but has since come back at a 15 which is right at the hump for most labs and slightly over for some. I also had an equivocal MPO. I failed to mention that my father had horrible crippling RA as well as 4 uncles and a cousin. Xrays show a little erosion but nothing extensive. Only when my Rheumy did an Ultrasound of my hands and wrists did he see inflamed synovial fluid. I was given a definite Fibro diagnosis and put on a low starting dose of Lyrica for that and my Rheumy did not want to rule out RA because of the inflammation on the Ultrasound and markers…. He started me on a Prednisone burst for three weeks to see if I react positively to me. I have only been on the Prednisone for a week now but I can finally lift my coffee cup without the agonizing pain that shoots from my wrist to my elbows… I still have no grip strength and have to have my hubby open bottles… I think it paints a total picture if you add up all the clues… I just want a diagnosis so I can start feeling better…. So… I know about the maybes?? I hope you get your answers….

  • By Mariah Z. Leach Moderator

    Hi RheumerGirl64~

    It can be so difficult to get an accurate diagnosis as so many of these autoimmune conditions have overlapping symptoms! I hope you get some good answers soon! In the meantime, hang in there and remember that we are here to support you!


  • By TrinketGirl

    Hello again!

    It’s been a while, but I’d thought I’d update: It’s RA, and Sjogren’s. 🙁 (My mom got her Sjogren’s Diagnosis from him too just last week, he’s seriously fantastic to work with!)

    He said the average for our area is Under 3 for CCP, but can be as high as 9 in still-normal range. Mine is considered high. So definitely different test numbers than the U.S.

    In the time it took to see him again, my knuckles on both hands have become balloons, and my wrists too, he was very quick to put me on treatment. He’s going with conservative right now, Plaquenil and Prednisolone shots (Systemic, too many affected joints). If I see no improvement in 4-6 months, he’s thinking of adding MTX as well.

    I’m glad I know now, but it’s a depressing diagnosis, especially at my age (26 this month), I have a LONG road ahead!

    I’m in full-flare now, even though my ESR and CRP are saying I’m normal. He said clearly it’s not accurate, as you can see the swelling in so, so many joints.
    He was hoping the shots would bring down the swelling, but it hasn’t, so he added Meloxicam as well, still swollen! I see him on the 17th, the day before my 26th birthday (Yay? haha!) to decide what to do about the current swelling, because we won’t know what the Plaquenil is doing until another 4-6 months!

    Thank you all! Mt starting symptoms seemed so out-of-place for RA, so maybe this post will help someone else in the Diagnosis journey. 🙂

  • By Mariah Z. Leach Moderator

    Hi TrinketGirl~

    I’m glad to hear you are getting some answers and and starting some treatment. I also understand how frustrating it can be to get a diagnosis like this at such a young age – I was diagnosed at 25 myself. It can sometimes be a long and frustrating process to find the right treatment, but I can tell you from experience that when you find the right one it can make a huge difference in your life! And, though you are right that you have a long road ahead, it is still going to be a great one if you can just figure out how to keep facing forward! Please hang in there and remember that we are here to support you!


    ~Mariah~ (Site Moderator)