What is the criteria for Seronegative RA

[Gaz227]

I have been struggling with immune issues for just over 5 years now , initially treated as PMR , my bloods ESR and CRP where raised when I first saw the GP, but swiftly returned to normal on pred currently in 4 Mg , they have never been raised since. RA blood test was normal . All my joints hurt , even my manusternal joint in chest, mri has showed lots of inflammation in multiple joints , but with the exception of my wrists no swelling or heat given off. My Rheumy has completely dismissed RA of any kind , aiming more at Sapho syndrome with Sjogrins syndrome , insisting I need to go on MTX . So what determines that this couldn’t be Seronegative RA , I researched PMR a lot as that’s what I was told it was , I’ve also researched Sapho syndrome which I hope to god it isn’t , if anyone has Seronegative RA can you enlighten me as to what your initial symptoms where , am I barking up the wrong tree, confused . Any advise would be appreciated . 👍

[Gaz227]

Just to add , I also have extremely dry eyes .

[Mmrr]

I have a diagnosis of seronegative RA, but neither myself or the biologics rheumatology consultant believe it to be the correct or only diagnosis. What it is, who knows, but I am presently waiting for a F2F appointment to be seen again.

I was given the diagnosis by default. My long protracted history is on my profile if you want to look. I'll not restate it all again here.

Essentially, an MRI showed synovitis, tenosynovitis and some erosions. I'm hot and bothered much of the time, with terrible fatigue at times.

My bloods are normal, with the exception of neutropenia.

Seronegative RD can be a bummer, as despite recent progress in diagnostic criteria, many Drs still dismiss the possibility of RD if the bloods don't show the necessary markers.

Keep reading, inform yourself, ask questions don't be afraid to challenge.

[Gaz227 in reply to Mmrr]

Thanks , really helpful info 👍

[Marionfromhappydays]

I was diagnosed seronegative inflammatory arthritis in May; Consultant was very sure it was arthritis, my crp was slightly raised (13) and my PV raised all other blood results normal.

Spoke to physio yesterday and she says I have text book sero neg symtoms which are:

Neck pain (feels hot, stiff)

Lower back pain (SI joint pain)

Puffy swollen knuckles, thumb and some fingers.

Pain in arches of feet

Heel pain

Shoulder pain

Jaw pain

Big toe sausage like

Rib pain & sternum pain

Fatigue

All the above Come and go, I dont usually get all these pains at same time (unless really bad day) some days my neck hurts sometimes doesn't etc.

I am awaiting methotrexate injections so am uncontrolled at the moment.

Hope this helps hope you feel more like you soon

[Gaz227 in reply to Marionfromhappydays]

Thanks with the exception of the swollen knuckles I have all those symptoms , but my wrists are so sore.

[oldtimer]

It's common for people who are sero-negative to have a vague diagnosis. It has been suggested to me that I have psoriatic arthritis rather than Rheumatoid Arthritis purely on the way it has behaved as I have never had psoriasis. And my notes still have a question mark on them despite being treated for Rheumatoid Disease for 40 years.

As long as the treatment helps, a diagnosis of undifferentiated inflammatory arthritis will do! And methotrexate would be the next step.

[Gaz227 in reply to oldtimer]

Thank you 👍

[helixhelix]

Since MTX is the first line treatment for seronegative RA does the name actually matter that much at this stage? I don’t say this stupidly as obviously it does matter in the long term to get the right diagnosis, but right now wouldn’t just getting some symptom relief be helpful?

If you are still on pred then that is probably controlling your ESR/CRP, but they are not definitive anyway. And did you have both Rheumatoid Factor and anti-CCP showing negative?

There are no formally agreed criteria for sero-neg RA, although the overall criteria for RA would include a sero-neg person with raised inflammatory markers and sufficient joint involvement. What sort of inflammation showed up on MRI as that should be able to tell if synovial, so odd that that wasn’t seen as diagnostically useful.

[Gaz227 in reply to helixhelix]

The MRI report on my chest stated significant Oedema on both SC and AC joints plus the MSJoint , I have had other MRI ‘s hips etc and they where pretty much the same a lot of fluid floating around them , still waiting for the results of my CCP and ANA bloods , I had them taken 6 weeks ago but no one seems to want to tell me the results NHS waiting lists I guess , GP said only the Rheumy can see them as he requested them , I have mentioned in the past that as I am on pred my ESR and CRP would probably be normal but it falls on deaf ears , seems common sense to me , if I drop to 3mg I can’t move so much pain . Thanks for the interest and info 👍

[Hidden]

The criteria for any seroneg arthritis is the ‘normal’ key symptoms of arthritis such as typical joint pain, swelling, fatigue etc. in the absence of positive blood work. That’s literally it, with the type being determined by the pattern of joint involvement and any relevant medical history e.g. psoriasis and asymmetric presentation would be suggestive of psoriatic arthritis rather than R.A.. If you have other symptoms in addition or excess of arthritis, then that’s where they start considering other autoimmune conditions either instead of or in addition, but to leap to that if the symptoms and test results are classic for arthritis and nothing else seems a bit extreme. Some forms of inflammatory arthritis such as psoriatic are inherently seroneg in 90+% of cases, and the sad reality is that those with any seronegative form of the disease usually spend a lot longer trying to get a diagnosis than those with positive inflammatory or autoimmune markers, so if nothing else, the fact that you are under a rheum and they recognise you genuinely have a problem is actually a real win.

In my own case, I had my first symptoms at 16, was back and forth repeatedly to the GP with various swollen joints, pain and fatigue between the ages of 25 and 35, and even a rheumy, who all said either it couldn’t possibly be arthritis or they didn’t know what it was, but my bloods were all normal so not to worry about it. It was purely because my fingers turned into sausages last winter that my new GP decided to request an ultrasound and they discovered grade 2 synovitis and got me referred, but at the height of a severe flare, even my crp and esr are both completely normal. Because it was left undiagnosed and untreated for so long, we now know I have damage in my toes and feet, both knees, one hip, one elbow, both wrists, both hands, and the years of ‘bad back’ starting in my teens that I was constantly told was nothing to worry about was actually recurrent sacroilitis as a result of arthritis in my SI joints and lower spine proven via MRI earlier this year.

As for the issue of methotrexate, I think something to realise here is that seroneg arthritis is treated the same as seropositive arthritis, and there’s huge crossover in treating all arthritis and autoimmune conditions. The drugs used for R.A. also treat PsA (which is normally seroneg), which are in many cases the same drugs that are also used to treat Lupus, Sjrogens and Sappho et al. Even if you ‘only’ have seroneg arthritis, mtx is an appropriate first line treatment to try and what many people start out on after diagnosis. It’s also worth noting that rheumatoid diagnoses can quite often change over time. People might be diagnosed with one thing on an almost provisional basis before eventually getting a firm conclusion months, sometimes years later. My most recent letter states ‘ seronegative inflammatory arthritis with spinal involvement, most likely psoriatic’ as my diagnosis: hardly concrete, but the best guess they have based on the evidence and my history.

Have you asked the consultant why they feel you have something other than ‘just’ arthritis? Understanding their thought process may help you in your understanding of what’s going on.

[Gaz227 in reply to Hidden]

Thanks that was really informative , I have some good questions now for the Rheumy 👍

[Hidden]

I was originally diagnosed 9 years ago with seronegative RA, later changed to seronegative Sjogrens. Then last year a vascular medicine professor saw me and said that the swelling in my hands was fluid retention not RA and same with eyes. She didn’t say what caused this apart from that it happens at rest and seems to be vascular. RA was called non erosive after a few years but then diagnosed with SS by positive lip biopsy

I’m now showing seropositive for systemic sclerosis but not sure yet if I have limited or diffuse. Never heard of Sappho will have to look that up. But answer - even seronegative RA usually shows on ultrasound or X-ray as erosive within a few years after onset. Or could be Spondyloarthritis which is seronegative.

So if yours hasn’t then there are plenty of other equally painful and serious rheumatic autoimmune conditions it could be. For example Sjogrens can often mimic RA - mine did. Also lots with Scleroderma are misdiagnosed first with RA and methotrexate is pretty much used for all forms of rheumatic autoimmune diseases including PsA, lupus, Vasculitis and Sjögren’s

[Gaz227 in reply to Hidden]

Thanks for the info 👍

[welshfilly1978]

Hi. I run SAPHO syndrome UK on Facebook I think it may help you if you joined that. I actually think you could have SAPHO.

Have you got any further?

[Gaz227 in reply to welshfilly1978]

Hi , I will join the group 👍