Hi
I've been experiencing joint stiffness and neuropathy in hands, arms, legs, and feet since November '16. I had a blood test last week and it came back negative for Rheumatoid Factor. I also had the Anti-CCP test and that came back clear.
Could I still have RA though? And is neuropathy a symptom for some people? I also have Sjogren's Syndrome and Hashimoto's Thyroiditis.
Thanks in advance for your comments.
Probably not. The possitive CCP is the strongest indicator for RA.
Both these tests are much more indicative if they are positive. For example, the anti-CCP is 90% reliable, so if you are positive there is a 90% chance you do have RA.
However, some 34% of people with RA are negative for anti-CCP so if you are negative then it means very little. The rheumatoid factor is even less sensitive. So sorry, you could still have RA. Being sero-negative for both does tend to make the path to diagnosis more complicated tho' as the doctors can only go on physical signs and symptoms, as well as inflammation levels.
True, not so straight forward but if both markers negative and inflammation markers normal the probability of having RA at this point is still quite low. Tracyd59 has true enough not mentioned what her inflammation markers are🤔
hi Simba1992, what do you mean by 'inflammation markers ' please?
CRP, sed rate.
Also important are you on antiinflammatory medication or immunosupressants?
Have you had US or MRI exams?
Hi Helixhelix.
This may or may not be of interest to you but I have found that there are different variations to the anti CCP test (for example anti CCP2) which indicates a 95-99% specificity to RA although sensitivity remains at 70-75%
I guess our hope remains that they find more biomarkers that can help diagnosis people who are sero negative and perhaps determine what treatment would respond best to the indicated blood markers. Am I dreaming that they are close to this?
Yes, thanks
I was sero negative for over 20 years, then after treatment for BC suddenly changed to positive. Yes, it is possible to have RA with RF negative. It could change. xx
I too am sero -ve. MY consultant says because I don't have Rh factor, it's an inflammatory arthritis. It could change I guess, but with out it +ve I'm not going to get much more intervention than what I'm on currently: HCQ & LEF.
I know there are guidelines to follow but I feel I'm in a treatment gap where MTX, HCQ & LEF aren't working but I can't go up higher due to the lack of Rh factor and hands that look fine. Apart from the OA nodules.
Time to look elsewhere for treatments, me thinks.
I know where your coming from, I hav OA as well and although just as painful it gets completely ignored.
This is so true. Nobody attends to the OA except for the occasional physiotherapist, but currently in much pain with the O A. Also I have a very low white count. Not sure that the Sulphasalazine is helping. I just got a referral from the hospital to see a haematologist. But my GP hasn't bothered to tell me she was doing that! I'd liked to have known and ask some questions. Feeling really very miserable right now. Have stopped the sulphasalazine as have awful sore throats and cold. HeAvens, I really need to get a grip. Meant to be going for blood test today but really don't feel well enough.
This website is a life saver. You can feel so on your own sometimes
Short answer: Yes. I was diagnosed as RA but have never been positive for rheumatoid factor. Otiginally I was told it was post-viral it clearly was not because I had not had a viral infection three months earlier like they suggested and eventually they changed the diagnosis. Post-viral should spontaneously disappear after a few months but mine was persistent and severe so am now on highly effective biologicals. for rheumatoid.
HTH?
You can have a seronegative inflammatory arthritis. I have psoriatic arthritis. There are other types of seronegative arthritis.
It's a royal pain in the Harris getting diagnosed if seronegative for some reason. It took years for me. Then I had a knee operation and this seemed to trigger things further. My inflammation markers shot up.
Do you have any skin issues?
If you are in pain, and have swellings, its worth keep going back to docs. As others have said, things can change. I had swellings, stiffness and pain for a long time before inflammatory markers shot up.
Psoriatic Arthritis is indeed difficult to diagnose, so tracy, if you have any skin issues (or have had in the past) do flag them up to your doctor. Nail involvement (anything from 'weird' looking nails to nails falling off) is an even bigger indicator of psoriatic arthritis than skin psoriasis is. Additionally there are no specific blood tests for PsA, many folks don't even have raised inflammatory markers.
The focus on RA is a real pain in the harris to borrow Nettac's phrase. There are other kinds of inflammatory arthritis but some GPs just don't consider them.
If you haven't been referred to rheumatology yet then do ask for that.
Hey I just seen your comment. I wanted to ask how high your bloods shot up? My inflammatory bloods are high negative for RF and ccp and apparently not showing anything but I have stop symptoms for inflammatory arthritis or shall I say seronegitive. Sister had psoriasis cousin has crohns. Had rheumy appointment yesterday and he’s vile he said despite what two docs have said and my pain management consultant have said he is telling me as a rheumatologist there’s not one ounce of inflammation going on in my body. His words exactly, so my doc is referring me to a recommended rheumy who specialises in spondylo for second opinion. So just wanted to ask how high they shot up after knee op. Thanks
Jayda
Not showing anything on mri** but that’s common for me docs have had to go round the houses to diagnose me with a nerve condition as I’ve ever shown in scans it’s weird
My inflammatory markers went up to 75 (not high by some folks standards) however I may have had colitis at the same time.
When I became positive, I developed Vasculitis. Awful, very rare and very dangerous.
We often collect autoimmune problems, you've already been diagnosed with two, Hashimoto's & Sjogren's. Seems you may also have seronegative rheumatoid too. Was it your GP who tested you & have you been referred to Rheumatology? Once you've been examined, had further blood tests & probably imaging done then you'll receive a diagnosis. It's not beyond the realms of possibility you've collected your third autoimmune disease I'm afraid.
This link explains seronegative & seropositive RD nras.org.uk/seropositive-se...
Tonight I read an interesting (to me!) report on the way the Americans have changed the criteria for diagnosing RA.
"another consequence of the changed criteria is that the general concept of RA is shifting. Currently some clinicians or researchers consider the presence of autoantibodies the central hallmark of RA, rather than the clinical presentation.
In other words, some consider patients who have no ACPA/anti-CCP or no RF as not having RA. This underestimates the burden of seronegative RA, which is often recognised later and has been shown to be associated with greater unmet need of treatment than seropositive RA."
So yes, it's a real pain in the Harris being negative for these. Especially if you land up with a rheumatologist who doesn't believe sero-negative RA exists. So I reckon anyone who has that experience shouldn't hang around but find another rheumatologist ASAP.
Sounds interesting! Do you have a link?
Links from this site don't seem to work. But it's MedPageToday and you just have to subscribe to the rheumatology alerts.
Thanks😊
My doctors have said i have seronegative rheumatoid arthritis as i too have a negative rheumatoid factor. I have also tested negative for lupus anticoagulant.
My blood test came back negative it took two years to diagnose me! And they only found out through an MMR scan.
I have sero negative RA. It's doesn't mean anything. See a Rheumatologist.x
My Rheumy treated my symptoms not my blood results, which have always been borderline, whatever that means. I did have X-rays MRI & US, although he had already put me on meds before the results came through.
Caza it's really nice to read that you were given Xrays, MRI's and Ultra sound as I have found that these are not routinely given. MRI's can be quite expensive to NHS and X-rays will not pick up on early bone erosions as well as MRI's. But ultra sounds can be a fantastic tool in detecting synovitis. My hand X-rays showed no bone erosions while my MRI clearly indicated knuckle erosions.
In addition, my inflammation markers were zero but ULtra sound indicated loads of synovitis.
This article may help you better understand sero negative RA. Keeping in mind that doctors may not be so quick to diagnose RA because often enough patients symptoms can change Indicating a different disease. I wish you the best of luck in finding a rheumatologist who keeps an eye on you and sorts it all out quickly.
More info on the importance of taking CCP test at first visit.
I just recently got told my blood test indicated I needed further testing and an appt with RA Dr. I had the CCP test and was told negative. My first blood test had 293 and was told RA normal range is 0-15. So I was way past normal. Two years prior I was at 256. I had a concern and a lot of jount pain. Many times I cannot grab a glass or steering wheel. The list goes on. Now I'm mad i wasted my time and money going for further testing. No one is saying anything about why my numbers could be so high. I have OA, but the tests were different for RA. Hmmmm
The high numbers you are indicating what do they stand for in your blood test?
Sounds like you are in a bad situation! I have talked with other patients in the waiting room at my RA's office! That really must be a problem! Your other health issues doesn't make this any better for you! Keep a diary, take photos of any swelling or redness in your joints! A negative lab work does not necessarily mean there isn't a problem! In fact my blood levels where so high that my Rheumatologist told me that was good news and bad news! The bad news was I had this awful disease, the good news was the counts were high enough that he could justify starting out with meds that he would be reluctant to prescribe otherwise! He also told me that many people did not test positive even though their symptoms was very obvious! I hope your rheumatologist is that understanding! If he is not, seek a second opinion! Be sure to get copies of all lab and X-ray reports! Good Luck!
Is there a DNA / Blood test for RA Markers?
Anyone tested negative for RA with all symptoms
Prism RA blood test
