Sero negative RA: What is the difference? Anyone else... - NRAS

NRAS

36,781 members45,475 posts

Sero negative RA

23 Replies

What is the difference?

Anyone else for Seronegative?

Is it still as damaging?

23 Replies

dont know but thats my blood factor rf negative too x

Me too. I got damage quite quickly. I get the impression that there's a trend against categorising different kinds of inflammatory arthritis as more or less severe than each other. Possibly because there are always so many exceptions to any such 'rules'. Good question though, it'll be interesting to see what people think.

Luce x

in reply to

Yes my hand is always painful- my right hand. Mostly swollen and tingling, and terribly clumsy too.

Do you get body pain and fatigue?

x

in reply to

At the moment fatigue has come back with a vengeance - I can basically only do light tasks for about 2 hours before nodding off. Last time I was like this was before diagnosis. I assume this is happening because mtx stopped working and I've now had about 6 months of mostly high inflammation - it's starting to bite!

Not sure what you mean by body pain - but I have always had relatively little pain. That's still true though, again, pains are starting to come back & I need to get my RA back under control.

Do you get fatigue? Actually I seem to remember you posting about it - could be mistaken. x

allanah profile image
allanah

Don't know! My negative RA is severe, I have read it tends to cause less damage to the joints though, but again ,don't know.

I am seeing Rheumy Friday, I will put it on the list of questions xxxxx

Yes I'm sero negative too. My RA before being diagnosed was extremely bad, so not sure whether it's any less serious or painful, but my joints(as far as I'm aware) are not too damaged, as in deformities etc.

Carolyn x

There's a bit about this on the NRAS website:

nras.org.uk/about_rheumatoi...

gaspajack profile image
gaspajack

I am also sero negative and have been off my methotrexate tablets for weeks now due to having a gastric byepass start injections on the 29th of this month and cant wait yes cant wait i didnt know how much the stuff works until you come off it my joints are sore and aching at the mo but go on google and just key in sero negative and all youre answers will be there.(i hope)

I now have the diagnosis of sero negative RA after a long time, My rheumy told me that it isn't so damaging as full blown RA - I'm still very sore though but hopefully my joints won't get any worse!!

I started MTX last week - just a small dose but increasing slowly.

in reply to

Good luck with your new meds.

I asked my rheumy when I was diagnosed. In my case my RF was a low positive but my anti CCP was negative. He said there are just no hard and fast rules relating to blood results. I think the main things that make sero negative worse are the possible delay in diagnosis - valuable time when RA goes untreated - and the mental block it gives some people where coming to terms is concerned. But otherwise, in my two year experience, it really doesn't seem to mean anything in terms of disease severity looking at those on here with sero negative RA in relation to those who are positive. X

helixhelix profile image
helixhelix

I think it's also relevant whether you are sero-negative for Rheumatoid Factor, or for anti-CCP or for both? My consultant termed me sero-neg, but she only uses this to describe Rheumatoid Factor as I'm actually strongly positive for anti-CCP. However some people seem to be called sero-negative when negative for anti-CCP as well. She told me that in her experience sero-neg is often less instantly damaging, but can be more difficult to control - she said my RA was being "slippery" at one point, and that's how it feels! She also talks about erosive and non-erosive RA, based on observation/x-rays and so on as well as blood results.

Personally I haven't put too much weight on my sero status, as it also so depends on how early you were diagnosed as it seems that firstly RA can take a couple of years to show it's true nature, and also the earlier you are diagnosed the more likely the drugs will be able to influence its future evolution. So it's not as simple as whether you have RF/anti-CCP and how strongly positive you are. And PaulineS, just because you're sero-negative doesn't mean you don't have full blown RA - sorry!

Also I've read various bits of research on ways in which you can predict how a person's RA might develop, (not to a precise level but just probabilities) and the levels of RF and anti-CCP are just 2 of several criteria used. Polly

in reply to helixhelix

Do you by any chance have links to that research (assuming it's online)? As I'd be interested. x

helixhelix profile image
helixhelix in reply to

onlinelibrary.wiley.com/doi...

How's the towel throwing in & orange monsters today? px

in reply to helixhelix

Thanks for link. Fatigue & stomach pains still very bad today - but must feel better on some level as have been a right b*tch to my husband & weeping over the cooking ....... such shenanigans usually signal a return to sort of normality. So towel & monsters stay where they are for now - but if tomorrow brings more pain that's it with the sulfa, I think. Thanks for asking. x

Nice new photo Polly - always good to have a change of scenery (even if it's snow!) and love the giant dog! Tilda x

earthwitch profile image
earthwitch

If you are negative for RF, and positive for anti-CCP, and have inflammation in typical RA places, then I think it would be fairly clear that it is sero-negative RA, as anti-CCP is a much more specific test for RA.

If you are negative for both RF and anti-CCP, then I'd strongly question your rheumatologist about whether its actually spondyloarthritis (which is the main form of seronegative arthritis, and should be about as common as RA, but tends not to be diagnosed as easily). It does seem that rheumatologists in the UK are more likely to call anything that isn't RA "seronegative arthritis" rather than taking the extra time and effort to check out properly if it is one of the forms of spondyloarthritis. The cynic in me says that its to save money - if its spondy then the only real forms of treatment are NSAIDs (which most folk can't take long term because of gut side effects) or anti-tnfs, whereas if they assume its RA they can get away with years of trying different and relatively cheap DMARDs (that probably won't work well anyway on spondy) before they have to offer anti-tnfs. Also, it does seem that very few rheumatologists really understand spondyloarthritis well anyway.

sparker profile image
sparker

Hi I am sero positive here is the link to the best explanation I think.

nras.org.uk/about_rheumatoi...

Steph

sammiebabe70 profile image
sammiebabe70

I am sero negitive, have had it a year now and in that short time ive gone from running in the park with my kids to swollen knee's, ankles, hands and feet and to walking with crutches. I am on different meds but at the moment nothing is working for me, i dont fully understand what RA is, but this site is brilliant for answers x

minka profile image
minka

their are so many conditions if you reserch this

it can start with another part of the body having an infection which then goes and the inflamation starts because the immune system which has killed the infection travels in the blood streem say to a knee or ankle or fingers etc

then the immune system sees this as another infection even though the infection particals have been killed

this in turn makes the immune system see this as a threat tot the body and attacks the dead cells causing inflamation again in another part of the body.

but your bloods will show up zero negative

bloods are not a good way in some of us to tests as it gives you nothing back in the earlier stages and can go away as fast as it come say 6 months sometime years and just goes

so in all a simple infection like gut water or anything can trick the body into beliving it has a problem in that area.

but their are so many inflamatory types out their everyone is diferent.

the damage is done the longer you have the inflamation as it not only affects the joint but also affect the ligaments then it in turn affect the other parts of the body which rely on this for support

earthwitch do you concure

regards john

Ozzy profile image
Ozzy

I have been told that I have sero negative inflammatory poly arthritis, all I know is that I am now on my 6th drmad and have just started infusions last month and everything still hurts and my fingers are swollen and my Das score was 5.74 and after 4 years my finger joints are showing up with damage on the xrays. I dont know if there is any real difference in the long term, I feel it is more about finding something that stops the progress of whatever lable they care to put on it at the time!

earthwitch profile image
earthwitch

It is really important to get a proper diagnosis, as the treatment for seronegative RA is quite different from the treatment for the other type of seronegative arthritis - spondyloarthritis. If its RA, then you will likely benefit from DMARDS. If its spondyloarthritis, then DMARDs do very little to relieve inflammation or stop damage (though MTX and SSZ can sometimes help some people a bit, especially with peripheral problems).

If you have been told "seronegative" but aren't getting any relief from DMARDs, then you really do need to question your rheumatologist very strongly about whether there is any possibility that its actually one of the forms of spondyloarthritis - especially if you have back pain or sacroiliac pain, or tendonitis (enthesitis) which are hallmarks of spondyloarthritis, or if you have a skin rash that might possibly be psoriasis (in which case it could be PsA)

pgirvin profile image
pgirvin

My lower spine was seronegative but haven't a clue what it means.

You may also like...

Sero-negative to positive RA factor?

Sero negative ra working in the garden

Atypical sero-negative RA presentation…anyone else?

disease is not fully under control). Any thoughts, anyone with same/similar presentation?

Sero negative or sero positive?

Sero negative, what works?

through to anyone to talk about my issues and pain (short of staff) So I am moving. Has anyone been...