Sero negative

[saffron07]

My bloods constantly come back with in normal ranges, white blood cell count a little high yet I have constant pain hands & feet with long periods of swelling. Ultra sound diagnosis of RA. Many months now on mtx three months on injectable. I fail to grasp how my blood don't reflect it? Another thing while I rant my mouth is so sore most of the time and sensitive what the hell is that about. Im more emitionaly balanced sbout diagnosis now but its had massive impact on my life, children, work etc Any feed back most welcome x

[Hidden]

I too at along last have been diagnosed at sero negative RA - the bloods are only really a pointer to RA & not a confirmation as we can say!

It just means that it seems to take longer for us to get a diagnosis rather than those who have raised ESR's etc.

I have two friends who's blood results are so high it looks like they should be crippled with pain yet are drug & pain free - so there's no rhyme or reason.

I do think that it's hardes for us with sero negative to accept that we do have RA as the clinical blood results don't prove it, however we do predent with other signs & symptoms.

[Ozzy]

I am also sero negative and my bloods don't reflect much either but the swollen joints do. After trying different drmads I am now on biologics so maybe things show up different with negative blood tests. But if pain gets to much speak to nurse at hospital and let her know you are having difficulty coping, don't as I did for a couple of years suffer in silence .

[Hidden]

I'm sero positive with a weak positive RF of 24 but a negative anti-CCP - which is the more reliable of these two diagnostic tools - so some would class me as sero-negative too because of the anti-CCP. As far as I've gleaned from being on this site for nearly 2 years, the blood results are just useful guiders and being positive doesn't mean that RA is more aggressive - it just means it's easier to diagnose and treat. People sometimes come on this site with the idea that their high blood markers must mean they have more aggessive disease but it doesn't seem to work that way and I have noticed that many of those with what I would class as severe RA that responds less well to the medicines are those who are sero-negative. Not sure if this applies to those with consistently low readings with ESR though - I think a high ESR is usually an indicator that there is a lot of inflammation - which can never be a good thing.

However my ESR and CRP have always been raised - ESR has sometimes soared to correspond, usually with pain somewhere. It has never made it below 26 but I have been pain free for quite a lot of the time so it is very confusing because I would say that I've been in remission and yet because of my ESR still sitting up in high 20s or 30s they say my DAS is still too high to be approaching remission as defined by the rheumatology people or my GPs. I conclude that I'm very lucky apart from sever side effects to meds but if I try to come off Methotrexate everything goes pear shaped again!

[Hidden]

PS I also wanted to say that everyone has different pain thresholds and what for some may be excruciating - others will not really notice - it's as dramatic as that I think. There's a big difference too in what men and women can cope with because of women being programmed to give birth. And those who have had other equally painful conditions throughout their lives may not feel pain in the same way as those who haven't. So pain alone may not represent active disease and absence of pain may not actually indicate that RA is inactive. It's not a good guide on it's own I feel.

[allanah]

I am sero negative anti cup but high eSR and crp inflammation levels, doc says it doesn't matter the label you have RA and will be treated he same!

[Ronnie63]

I am early diagnosis strongly sero positive with a Rheumatoid factor of 259 and anti-CCP positive with 1100 So very conclusively RA. The anti-CCP is set out in a range, what this does is indicate whether your RA is mild, moderate, severe/aggressive. I was told that mild would be around 200. As mine is 1100 I am firmly in the severe/aggressive category. Whilst the treatment is essentially the same at the beginning these results become relevant in terms of NICE guidelines on how to get the disease under control and at what point you qualify for certain combinations and drugs. Like you, my routine bloods don't show much anymore (ESR usually around 6) but I still have some swelling and pain. My rheummy has said it's about how you feel not just what the bloods are showing. Maybe talk to them about how you feel, there are others things you can take to ease the pain/ manage the fatigue xx

[Hidden]

Ronnie - there are people with very aggressive RA on here who are negative for anti-CCP (40% of people with RA have negative anti-CCP and some have RA severely) and some who may have started out with terribly high readings who have succeeded in getting really good control over their RA. It is true that it's more likely that a very high positive will mean you have aggressive RA - but it can also be better controled for a variety of reasons. Good control might be achieved more quickly because of swift diagnosis and treatment and because it might respond much better to the drugs available and also people are more likely to accept medication and accept their RA if they get a strong positive readings too.

The one thing I have learned from people on this site is that there are absolutely no hard and fast rules with RA or with any of the blood test results either. Tilda x

[saffron07]

Thanking all for the information and sharing which really helps to confirm my own understanding of this disease, gender impact and pain thresholds are interesting topics and must play a role.

I often read blogs and I suppose foolishly think well I've got not bloody markers so what's going on, maybe just trying still to marginalise it some what not sure. The pain, swelling and stiffness are very real and I've seen little posstive change,at review in August I will bring up discussing options open to me.

[Hidden]

Its a good question too Safron but I think the main thing to focus on is what does show and how you feel. For me RA gets flagged up by inflammatory markers because I rarely show swelling. For others such as yourself it may show up with pain and swelling and for some such as Georje - it shows itself in the more official ways. But if you have been put on a drug such as MTX then you are obviously believed and your RA is acknowledged. Some don't even have this to fall back on so there are always positives. But I know it does make it feel much less certain when there's nothing in the blood and I feel for you and others in this respect. Tilda x

[Hidden]

Oops I meant to say Ronnie not Georje - sorry!!

[Hidden]

Hi there Saffron,

I'm sero-negative and the only disease markers that ever show up in my blood are the inflammation ones ESR & CRP. My RA is all over the place - sometimes I feel very well in myself - but it has been classed as severe for quite a while.

As for rheumatoid factor and anti-CCP etc. I read that scientists have been looking for an antibody that will allow doctors to definitively diagnose RA from blood tests for ages. For a while they thought that RF was that antibody, then they found anti-CCP and so on but it turned out that none of them clinch a diagnosis so they are still looking. This page on the 'RA Warrior' website explains it very well I think:

rawarrior.com/blood-tests-f...

Luce x

[Hidden]

I hadn't read that blog before thanks Luce - it was really good - especially the final paragraph; "I had already spent many grueling hours researching for this series when I happened upon an article entitled The Many Myths of Erythrocyte Sedimentation Rate and C-Reactive Protein. I was thrilled to find a rheumatologist who holds the following viewpoint. “Learning when to ignore a test and when to rely on it lies at the heart of good medical care… It is, perhaps, time for more research about testing and measurement in clinical practice.” I recommend the article in the Journal of Rheumatology by Frederick Wolfe, M.D."

[Hidden in reply to Hidden]

That was the quote that stayed with me too.

[Hidden]

I get frustrated because I feel sure my ESR is normal when its about 26 but none agree with me and all insist it could be lower. The American College/ Centre of Rheumatology says 30 for women and BMJ article said with women take age and halve and then add 5 which would make my normal 30 - in which case I probably would classed as being in remission - a few swollen knuckles aside. I feel they've got different goalposts to mine? X

[Ozzy in reply to Hidden]

i just had a look at my blood test results and my CCP is just listed as negitive, my ESR has never been higher than 12, it was 6 when I was first diagnosed, and my CRP no higher than 4. I am now on my 2nd biologic Rituximab, which at the moment only seems to give me neck pain as well, and I have tried and failed 6 DRMADS. I have no idea what the blood tests are for where I am concerned except to check when my WCC and HB falls to low. I feel it is down to the amount of swollen joints, pain and tiredness you suffer.

[saffron07]

I want to thank everyone got there insightful replies which hives much to digest and think over. I realise that blood, tests are just a part of diagnosis and that the pain and tiredness compounded by the swelling and stiffness are very very real xx