Sero negative or sero positive?

[Frankiefarr]

The OT told me this week that I have sero negative RA. But I test positive on the anti cccp test so surely this means I have sero positive RA (my RF factor is negative)

[helixhelix]

There has been lots of debate on this. I'm the same, negative RF and positive anti-CCP. My rheumy always describes me as sero-negative, and with positive anti-CCP. Her view seems to be that the RF is the first antibody to describe, so that's what gets the sero negative tag. So quite often I'm just written up as sero-negative with no mention of anything else. Which I'm quite relaxed about as I have a firm diagnosis and treatment plan so doesn't make any day to day difference.

[Simba1992]

You can be sero positive or negative and have or not have RA. If you are sero positive you will get RA with 57% propability. If you test positive for CCP you have a 97-99% probability of getting RA. There are however rare cases where both RF and CCP are negative and you still have RA, usually CCP turns possitive at a later stage in these cases.

[Jacki08 in reply to Simba1992]

I have sero negative RD--- my bloods are always perfectly normal--- my diagnosis came after an ultrasound of my hands showed masses of inflammation and erosion of joints .

[Simba1992 in reply to Jacki08]

Your CRP was normal too? What about the sed rate?

[Jacki08 in reply to Simba1992]

All bloods always normal -- occasionally my platelet level drops but that's due to meds 😊

[Simba1992 in reply to Jacki08]

On what basis was your RA diagnosed? Sounds interesting. Inflammation and erosion in hands can also be caused by OA. Are any other joints affected?

[Jacki08 in reply to Simba1992]

Yes--- feet, knees, hips, ankles, shoulders, most joints actually-- and I had severe bi lateral carpel tunnel-- which disappeared when I started hydrox and mthx. My consultant said she has had cases before with normal bloods .

[Joy_1 in reply to Jacki08]

Hi Jacki08,

I think we are in a similar camp. I came up negative for RF and CCP. My bloods are always normal. I have had 2 bad + long lasting flare ups since being diagnosed in 2012. And yes my CRP and ESR are always in the normal range.

Go figure this crazy disease!

[Jacki08 in reply to Joy_1]

Thank goodness it's not just me. I'm having a long flare atm --- when first diagnosed I was on hydrox and mthx-- was taken off those due to extreme side effects -- now on humira- no side effects but not controlling my RD. Saw the nurse last week who suggested adding low dose mthx to see how I cope. !! I always thought that have RD NEG was a milder version of this lovely disease-- not according to my consultant lead team 😊

[EmmieL in reply to Jacki08]

Same here. Diagnosed based on clinical signs. Later on a joint fluid analysis was positive as well as a Vectra DA test. Me sed has actually shown zero before when I had massive amounts of swelling and obvious inflammation.

[Joy_1 in reply to Simba1992]

Hi Simba1992,

I'm one of those rare cases you mentioned. When you say CCP usually turns positive at a later stage. Have you found out at roughly what point this happens? Or is this a case of "how long is a piece of string". I'd be really interested to know.

[Amy_Lee in reply to Joy_1]

Me too. I started with RF and CCP negative but my ESR and CRP were terribly high. 8 months after the treatment, I was and am on mtx and arava, my CRP remained negative. I hope it will not turn positive. My rheumy has not ordered the test since.

This is a very interesting topic. I will ask my rheumy when I visit him next in Jan.

[Joy_1 in reply to Amy_Lee]

Hi Amy_Lee

Yes I would be very interested to hear what your Rheumatologist says. Do let us know.

I have had a lot of fatigue up until about 2 months ago. Now my brain is working, ie brain fog has lifted, my brain is functioning back at 70 to 80% and I am keen to understand my condition further. Especially as I don't fit neatly into 1 box.

[Amy_Lee in reply to Joy_1]

Joy_1 ,

I will get back to you on this after I see my rheumy. I read somewhere when RF and CCP are negative, that means after remission, the patient will have a lower flare-up rate.

[Joy_1 in reply to Amy_Lee]

Thank you Amy_Lee. Much appreciated.

[Simba1992 in reply to Joy_1]

Usually, what I have undestood, if you do not have positive CCP but still diagnosed with RA the disease is less aggressive and less erosive. The positive CCP may appear later when RA more established.

[Joy_1 in reply to Simba1992]

Now that is interesting Simba1992. Thanks for the info.

In my case thus far (and long may it continue) I have no erosion. I get inflammation but once it subsides there is no erosion.

[Simba1992 in reply to Joy_1]

Have you ever thought about trying an anti inflammatory diet? In cases like yours where the RA is not aggressive, yet anyways, good results often. Or LDN?

[Joy_1 in reply to Simba1992]

I have always eaten very well Simba1992. I take Omega 3 and Turmeric. I am a food scientist. But please don't switch off - I am open minded and willing to try anything that is not risky or as a 'foody' I know is not outrageous.

Have you found any dietary changes/anti inflammatory diets that have worked for you? I have time at the moment to sit at my PC and investigate as I have a flare in both my feet + little fatigue so my brain is on and ready to go!

[Simba1992 in reply to Joy_1]

Yes Joy there are nutrient dense well planned anti-inflammatory diets that have worked for a great number of AI patients. The best known are Dr.Terry Wahls protocol and the AIP diet Yes I am controlling my RA with AIP diet, LDN an supplements. The strongest inflammation triggers are gluten, dairy and sugar. Just by leaving these out for 3-4 weeks many see a huge difference. Hope this helps😊

[Hidden]

To show just how complex all this is immunology is, I thought I'd explain that, in my case it turns out that I don't have RA although, when my symptoms first started, my RF was positive but all other autoantibodies tested were negative.

After five years of being diagnosed with and treated for RA, I've been rediagnosed with seronegative Sjogrens. My RF is now negative but my ANA is a clear positive with a pattern more closely linked with a Scleroderma or Polymyositis, which so far I don't have thankfully.

My Sjogrens rediagnosis was made by lip biopsy but, if my ANA hadn't been positive now, then I'd not have been offered the lip biopsy option. Primary Sjogrens very often presents in the blood as high RF (and +ANA) and bilateral synovitis and high inflammatory markers. But to be seropositive I would need to have anti Ro & La antibodies - which I don't!

At the end of the day a person can only be classed as seronegative for any of these diseases as long as at least one autoantibody is positive and symptoms and signs tarry.

Otherwise, apart from rare exceptions, RA is the only disease sometimes diagnosed despite entirely negative bloods. All the connective tissue diseases can show up in a high titre RF or ANA - but after this there are more specific markers for each disease.

For example to have seropositive Lupus you'd need to have Anti-dsDNA as well as +ANA or RF and symptoms.

[Amhoarten]

I don't really understand the bloods.

When I first had blood tests I had positive Rf and had high CRP so I was sent to rheumy and had the CCP which came back at 158. Aggressive treatment started.

However my last blood tests showed negative RF but CCP still up at 150.

So what does that mean? Can the RF drop with meds?

[Simba1992 in reply to Amhoarten]

RF more than CCP.

[Frankiefarr]

With me all my tests are negative. Inflammation, the whole lot except the anti-ccp test which was slightly elevated. When I was seen the consultant said all my joints were badly inflamed and of course I'm in a huge amount of pain but....it never shows in the blood tests except this one

[Simba1992 in reply to Frankiefarr]

Have read that this is not unusual in patients with early RA. The positive CCP shows together with your symptoms a most probable diagnosis of RA since CCP antibodies are as good as exclusively seen in RA.