seropositive RA 8 yrs ago, now seronegative?

Hi. This is my first post. I'm having a hard time finding information re: having a positive RF and positive anti-CCP with 21 inflamed joints 8 yrs ago, now being told both RF and anti-CCP are negative...maybe i don't have RA! Has this ever happened to anyone else? i'm having lots of joint pain, especially in ankles/feet, hands/wrists and more, but inflammatory markers are all neg (always have been) and no joint damage seen. I just had a bone scan that came back negative. My ANA titer is 1:160 and speckled, which can indicate Lupus, but my rheumy is not saying that. She said she doesn't know what is going on. Anyone out there have any advice?

thanks

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  • Hi - I've had a slightly similar issue but not as dramatic. My rheumatoid factor was positive for the first year of my RA symptoms - but then, after two years on methotrexate -.it was down to equivocal and my RA symptoms have all but gone - only to be replaced by other connective tissue symptoms. However my anti CCP and ANA were both negative. I've been unable to tolerate four DMARDs to date so am just on a low dose of Prednisolone.

    I have a new rheumatologist and am waiting to see what he comes up with, having had all my autoantibodies retested four years on from my diagnosis of RA. I'm expecting my diagnosis to switch to Undifferentiated Connective Tissue Disease. Unlike yours my inflammatory markers fluctuate in accordance with my pain but this on,y confirms autoimmunity - not which type.

  • My new rheumy has done all the testing again as well. everything negative except for the ANA, which again confirms autoimmunity, but not diagnostic, like you. Why Undifferentiated Connective tissue disease?

  • Hi Peggy - do you have any synovitis in your hands they could ultrasound?? Have you been on dmards and are you getting to stay on them?

  • Hi. i have been on mtx since the beginning, have tried enbrel, humira, plaquenil, sulfasalazine, rituxan for several years which worked miracles until about 18 months ago, and now xeljanz. the xeljanz took about 3 months to work, then wore off about 6 months later. my doc has increased that dose to 2 in the morning (usually 1 2x/day) and it seems to take the edge off. but i dont want to take it if i really dont have RA, ya know? i've never had ultrasounds, and i don't really swell up much.

  • First, I think it's really interesting that your bloods could show you have seropositive RA and then seronegative RA. I'd heard that it could start off the other way around, but never like that. It makes me quite curious.

    That said, whether or not you have a positive diagnosis of RA, if you have RA-like symptoms (which agreed are similar to many other autoimmune diseases), isn't it better to use a treatment that works to control your pain and inflammation? Don't worry about how the drug is labeled. Heck, most of us are on anti-malarials and we don't have malaria! :)

    I also think that doctors put too much stock in lab results. Just because your inflammatory markers are showing up as "normal", doesn't mean you're not experiencing inflammation. Normal CRP is under 8, but normal-for-me is under 1. I was in a major mobility-impairing flare for a year and I don't think my CRP ever went above 2.5 that entire time. Your doctors might ignore you and rely entirely on your labs, but you have a duty to yourself to listen to your body and tell your doctor what symptoms you are experiencing, despite the lab results.

    Good luck to you!

  • "Undifferentiated" is the term used for people who haven't presented with one clear cut rheumatic disease but have an overlap of many.

    RA should be diagnosed on the basis of bilateral synovial swelling - usually initially in hands and feet - not on bloods alone. If your diagnosis was made on the strength of your autoantibodies first and foremost then this may be why your rheumy is sitting on the fence for now.

    My last rheumy said that these connective tissue diseases can continue as mild/ non erosive or become more clear cut as they evolve. Mine doesn't seem to be evolving in any obvious way - most of my neuro symptoms could fit Sjogrens, Lupus or MS (most of all) but I haven't positive autoantibodies or erosions or lesions for any of these. I do have Hypothyroidism and I did have very clear bilateral synovitis a few years ago and on this basis he said he was sticking to seronegative RA for me. I had an ultrasound of my hands five weeks ago and there was no inflammation - which I predicted because my hands are fine now apart from some wear and tear and stiffness and a bit of drift from the initial flares of the first two years. I took photos of my finger joints when things were very obviously swollen and he then saw this for himself and diagnosed me four years ago.

    But now this has gone away I'm not sure where I stand. If I was well and pain free I would just thank my lucky stars and move on. But having severe pins and needles in my peripheries , cold wet sensation in legs and tight sore swollen feeling in mouth and gums and dizziness, arrythmic heart and extremes in circulation means I find it hard and not having an explanation for these or any treatment worries me a lot.

  • Seems like too much trust in blood tests that are not always what they seem. Markers yes, but not the in all and be all they might seem. In my opinion they are used too be much to save a consultant having to look at every joint.

  • Hi everyone this is what I've been diagnosed with ( primary ) I've been on sulfazalasine 2 years and Metx inj since dec and I'm getting worse every joint is affecting me although my hands feet and lower joints are the worse I'm going down next week to be tried for Biologics if eligible to put matters worse I was in the HDU in our local hospital with a severe angina attack and I'm almost certain it is the metetrexate that's doing it as I'm more breathless now since I've been on it sorry for babbling on my question is what is the term sero negative stand for

  • Hi, can I suggest you give our helpline a call on 0800 2987650 or email them at helpline@nras.org.uk as they will be able to help answer your question.

    Hope this helps.

    Val

  • It would be good if someone could answer here. A phone call can only be heard by the person calling, but posts here benefit lots of people.

  • Hi Peggy, make enquiries about vasculitis! I have waited two and half years for this diagnosis because the Doc's couldn't come to a definite conclusion. Apparently difficult to diagnose! Have you had urine checked lately, and blood tests? The hospital were taking regular blood tests from me and the results wasn't being monitored because the signs were there, just that no one picked up on them until a random blood test at my surgery spotted it.

    I am only saying its possible because your symptoms are similar to my own.

  • I have zero negative RA so my tests never came up positive, but based on history, CRP & symptoms my diagnosis was given. Interesting to hear more about how you feel. Take care. Cheers Doreen

  • I have all the symptoms, a 'borderline positive' acpa test but negative everything else, swelling etc etc but the rheumy and GP refuses to consider sero-negative RA and just says it's osteo and fibromyalgia...

  • achydunlin,

    Time to see a new set of doctors!

  • Thank you, it's very difficult isn't it when the professionals (not family and friends who've witnessed it though) disbelieve your swellings and by the time your appointment comes through you see them on a 'good day'. ah well back to the drawing board.

  • My doctor wanted to change my diagnosis from RA to fibromyalgia too because my tests are all negative except a positive ANA. But he ordered a hand MRI just to make sure. It showed bone marrow edema and synovitis which he says confirms RA. Ask for an MRI. Maybe then you will find out for sure.

  • I was in a similar position; in my case, it was a hand ultrasound that confirmed my diagnosis.

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