Seronegative, what does it mean: Hi All I love... - NRAS

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Seronegative, what does it mean

Garnacha profile image
34 Replies

Hi All

I love following this group which is invaluable for the information shared, I’ve seen quite a few posts with people who are seronegative, what does it mean please? From what I can gather it’s a marker on whether you could have arthritis but even having a seronegative result doesn’t mean you don’t have arthritis?

I’ve had a number of blood tests & been diagnosed with psoriatic arthritis, I can’t see any mention of seronegative on the letter sent to my gp from the consultant only, CRP remains raised at 10mg/L & slightly raised MCV of 102, I’ve no idea what these mean either.

I guess I’m being nosy but also trying to understand all the medical terms

Thank you x

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Garnacha profile image
Garnacha
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allanah profile image
allanah

Thry can test blood for rheumatoid factor . If its positive you will have the tendency to get RA , BUT it doesnt always develop. If your sero ( sero means blood) negative the test hasn't found the rheumatoid factor in the blood, however , the test is not really reliable ! And the treatment for both positive and negative rheumatoid factor is the same !!!

Garnacha profile image
Garnacha in reply toallanah

Thanks Allanah, you learn something new every day, didn’t know sero meant blood. Do you happen to know what CRP & MCV mean too please? X

allanah profile image
allanah in reply toGarnacha

Mcv is a check of red blood cells usually checking thing like anaemia and crp is the test to show inflammation going on.If you look on the nhs website it goes into lots of details xxxx 😍

Garnacha profile image
Garnacha in reply toallanah

Fab, thank you so much x

nomoreheels profile image
nomoreheels

Hiya Garnacha. Basically it means that you tested negative for Rheumatoid Factor (RF), an autoantibody or blood protein which whilst sensitive isn't very specific, & anti cyclic citrullinated peptide (anti-CCP), a type of auto antibody, plus inflammatory markers. Around 30% are diagnosed seronegative, symptoms are always taken into account in both seronegative & seropositive, bloods don't tell the whole story. Also it was always thought that those diagnosed seronegative had a less severe form of RD, though thoughts are changing on that. The prefix sero just means serum, the part of blood that doesn’t clot or have blood cells. It's possible in seronegative that the diagnosis can change, for example to Psoriatic Arthritis or Spondyloarthritis. Over time it is possible you develop RF & CCP & the diagnosis changes to seropositive.

Garnacha profile image
Garnacha in reply tonomoreheels

Thank you, as I've been diagnosed with Psoriatic Arthritis which was mainly after the consultant examined my scalp and I said that my mother has psoriasis and my son has it really bad on his trunk and legs (he had to undergo light therapy which eased it slightly but not completely) would the blood tests above indicate I'm seronegative or seropositive? sorry, it's a lot to take in and understand, I have a consultants appointment Tuesday so trying to find out as much as I can since I last saw him and he dropped the bomb shell of me having Psoriatic Arthritis x

helixhelix profile image
helixhelix in reply toGarnacha

People with psoriatic arthritis are usually sero-negative. One reason why it can be so difficult to get a diagnosis!

But really don’t worry about it as once diagnosed there’s not much difference. Concentrate on keeping track of your CRP levels with should drop as the treatments start to work.

Garnacha profile image
Garnacha in reply tohelixhelix

Thank you x

nomoreheels profile image
nomoreheels in reply toGarnacha

Seronegative. If you read my reply again I said the RD diagnosis can change to PsA, but I should have added that seronegative from the outset can be a different diagnosis to RD, as in your case. Diagnosis can be so hard to understand unless your Rheumy takes time to explain things fully so don't worry. Unfortunately time restraints often don't allow for this. There's a lot to take in too especially if you haven't come across the conditions before. I didn’t know anything about the condition either, apart from my Nan had it, I didn’t know much otherwise. I was fortunate in that my GP had a Special Interest in Rheumatology so she took time to explain what was going on once she'd examined me. My h was convinced I had gout which I scoffed at, I just knew my feet were hurting so badly I could only walk on the outer edges of them!

My Consultant always allowed longer for the first appointment following diagnosis. Where I was living at the time you went to a diagnostic clinic prior to seeing your Rheumy. Tests were done on site, images taken & further examination done. At the end of the day you were prescribed appropriate meds & 3 months later you saw your Rheumy for the first time in the hospital. It meant more time was taken over diagnosis & you'd had the 3 months worth of meds prior to your first appointment.

Garnacha profile image
Garnacha in reply tonomoreheels

Thank you, sorry to be a pest but what does RD stand for please?

The consultant initially thought I had tendinosis (this was back in February last year) & gave me a cortisone injection in my elbow as this along with my hamstring were causing me the most pain, he also prescribed me with etoricoxib and hydroxychloroquine, I also had a cortisone injection in my right shoulder and a guided one in my hamstring in March, the injection in my elbow (which I've never had such pain after) and shoulder both worked for a time but not the one in my hamstring, obviously we went into lockdown in March and by April the pain in my elbow whilst it had eased slightly didn't seem to be getting any better, I stopped the etoricoxib thinking it wasn't doing anything and within a couple of days I could hardly move my elbow so started it again. As the country was in lockdown I didn't think I'd be able to get to see the consultant again but in November, I'm guessing as my left elbow was hurting so much I was using my right arm more and more, with the result that my right shoulder started killing me in pain, I e-mailed the consultants secretary to say I think I need another cortisone injection in my shoulder and managed to get an appointment with the consultant, I'd recently had some blood tests which he had and at this appointment confirmed that it was psoriatic arthritis, he put me on methotrexate but said to stop the hydroxychloroquine, within a couple of days I was in so much pain in the areas mentioned but it seemed to be spreading in other areas of my body, I contacted the consultant who said to restart the hydroxychloroquine but think stopping this has started a relapse as the pain just kept getting worse, I contacted the GP who gave me prednisolone for a week which helped but then I developed a severe buring sensation in my left arm, it was so bad I had to sit with ice wrapped in a tea towel to ease it, I again contacted the consultant who said it was nerve pain and put me on gabapentin, I don't have to sit with ice at the moment but I am having to take co-codamol as well as amitryptalene when the pain gets really bad.

Cheesed off is an understatement so in a way I'm looking forward to seeing the consultant on Tuesday but also fearful that he'll suggest another cortisone injection in my elbow, I cried for 3 days last time as the pain was so horrendous.

sorry for the long winded essay x

nomoreheels profile image
nomoreheels in reply toGarnacha

You're not a pest! It's Rheumatoid Disease, instead of Rheumatoid Arthritis. Those who don't have it pick up on Arthritis, understanding it as the more common, not autoimmune, Osteoarthritis. So many of us are fed up of explaining it's not the pain you get in your knees we choose to replace the Arthritis with Disease, which also covers other Rheumatological conditions. That said many of us also have secondary OA & it can be blinkin painful. I've problems with my fingers, bone on bone, I’m putting off surgery for as long as I’m able, so do understand it's no walk in the park but RD is quite different & of course treated differently.We're prescribed similar meds, MTX (HCQ was the first DMARD I tried), swap gabapentin (which I tried first) for pregabalin, amitriptyline, co-codamol, etoricoxib. Etoricoxib works better if taken continually. A while ago a directive went out due to possible heart issues in extended dosing to limit the use & my GP decided in his wisdom to cut my 90mg down to 60mg & on alternate days. Big mistake. What he should have done is weigh up the pros & cons & take into account my cardiovascular status. Needless to say my Rheumy reinstated it to nightly though I am coping on 60mg. I'm on prednisolone but long term low dose. I have one or two more, transdermal pain relief & a couple of other tablets.

Steroid injections into bonier joints can be painful. The most discomfort I've had from one was in the base of a finger, I prefer not to have one there again.

I hope your Rheumy has a plan of action for you, & doesn't suggest steroid in your elbow. 🥴

Garnacha profile image
Garnacha in reply tonomoreheels

Thank you so much, yes, I do feel by mentioning arthitis people assume it's the one everyone can get as the get older, in particular my dad lol (who'll shortly be 80) he keeps saying "but I know people with arthritis and it might only be in their hand or finger and they still carry on and go to work" think I'll definitely be saying RD from now on so at least people may ask what it is and I can explain it's an autoimmune disease. I'm glad to know I'm not the only one on lot's of medication, perhaps the rheumatologist will recommend pregablin for me next week, my GP did say try not to take the etoricoxib every day, but after I stopped it in April have continued to take the 90mg each morning with the consultants approval I assume as I told him at the appointment in November what happened when I did stop it. fingers crossed yes re the steroid

🙄 x

nomoreheels profile image
nomoreheels in reply toGarnacha

Excellent example! The trouble is people offer their suggestions, their intention helpful more often than not but saying RD stops them in their tracks! I'm on 11 meds in total. One of them is a supplement though, Adcal-D3. I keep having annual med reviews & the amount doesn’t go down! Keeps me upright so shouldn't moan! I managed to get to max dose gabapentin but I had no results. Fortunately pregabalin works.I wonder if you'd benefit from taking your etoricoxib in the evening? I find doing so I'm less stiff in the mornings, can get going within the hour usually. Might be worth asking your Rheumy what he thinks.

Garnacha profile image
Garnacha in reply tonomoreheels

Thank you, yes I did wonder if I'm taking it at the wrong time when I saw you or someone say they take them at night, definitely worth asking as at the moment the pain in the morning is horrendous and I can't wait to take the gabapentin and a co-codamol, I'll remember to ask that at the appointment hopefully x

Neonkittie17 profile image
Neonkittie17 in reply tonomoreheels

I was the very same .. and almost a year to diagnose due to negative blood results for RA. I was convinced I’d got a post flu virus and so was my doc. Then all became apparent with my feet. 😑. Then I went to a very high ESR and positive RF. You know how that foot madness goes! xx

nomoreheels profile image
nomoreheels in reply toNeonkittie17

Do I ever! It's such a bind when they're having a double dyed dicky fit, you just can't get the position that's least painful. With lockdown my Podiatry service have gone back to open wounds only so I'm trying to deal with the corns on the balls of my feet. They’re usually seen to every other month at the least & they dig deep which I can't (or won’t!) do so they're quite painful even with the cushioning pads. I'm seropositive & was diagnosed a little over a fortnight after GP's blood results came back. I know I was very fortunate, it must be very frustrating knowing & feeling something is awry but no diagnosis, or effective treatment. I do think they meld together more then is fully known however, but bloods say no.How’s things otherwise Julie? x

Neonkittie17 profile image
Neonkittie17 in reply tonomoreheels

Not too bad thank you 💗 I’m sorry to hear of your corns. It’s not easy for some to reach to these things either is it?! Grr. The balls of the feet are so hard to cope with when they have lost their muscle. Happened to mine. I did exercises to build a bit back up but my feet are flat so that’s an added nuisance! Osteo in both ankles but it’s much improved with good orthotics. I’ve had a frustrating ten months trying to get on the CEV register as you’ve probably seen! Admin bungles delayed but now I’m on it. I’m not getting the advice of my biologics specialists re my Rituximab and timing or efficacy for the vaccine, but thanks to NRAS and also the BRS website and discussions here that we share info on, I have pretty much sussed it out but I did want to ask a couple of specific things. Hope you’re keeping well otherwise and busy. Can’t go out really here locally for a short walk .. maskless hoards who just won’t distance here. 😖Hope you’re doing alright? X

nomoreheels profile image
nomoreheels in reply toNeonkittie17

Oh good. We just get on with the things we can do little about without the help don't we? My arches are so low they're imitating pancakes now. My orthotics help lift them & make my legs less bandy looking but my feet get so tired, need a new pair! My ankles don't respond to diuretics & an ECG showed nothing to be concerned about so they remain too thick to put in my ankle boots. No hum, someone will tell me what it is some day! I'm pleased yours are improved with your orthotics.

How crazy having to chase being on the CEV register. Pleased for you that's sorted now though, if frustrating.

I'm not doing too badly thanks. Frustrated that I can't get out in the garden but spring is on the way the bulbs tell me. First foray our last Friday, hospital appointment but still. It's amazing much changes in your local area when you've not been out for a while, h kept saying that's been done/like that ages! Keep safe. x

I too am s- negative spent years going back and forward to the gp who kept on saying it was depression 🤬🤬. It took 15 years before I was diagnosed as gp didn’t know about s- negative and RD ( I call it rheumatoid Disease as it just doesn’t effect just the joints. This disease is much more complicated) My bloods are always good .

Garnacha profile image
Garnacha in reply to

Thank you, aah = RD rheumatoid disease, yes I know how you feel, had so many blood tests and physiotherapists giving me various exercises which I think didn't help the situation and perhaps made some of my joint pain worse, a chiropractor I saw in the summer was really helpful and he too gave me exercises but when there was no difference at all suggested an x-ray on my elbow, this showed deterioration in my elbow joint, he arranged a guided cortisone injection this time to hopefully avoid the horrendous pain I had last time and the dr who did this said that I actually needed 2 cortisone injections as there was inflammation on the inner side of my elbow along with a calcium build up as well as inflammation on the outer side of my elbow, I've yet to drum up the courage to have the outer elbow injected

🙄 x

in reply toGarnacha

🥺it’s never easy

Garnacha profile image
Garnacha

Thank you, yes last year it was found amongst the many blood tests that my B12 was slightly low so was prescribed cocabalin (sorry it's not the right spelling) in tablet form, when I had my most recent blood test at the dr's they said my B12 was fine and I shouldn't really need the tablets, my answer was if it was fine then surely that's because I'm taking the tablets, the consultants letter to my gp referring to the blood tests taken at the drs said (which I didn't include in my original post) I had normal renal & liver function, normal full blood count & normal autoantibodies, also normal B12, folic acid & thyroid function, however when I went for my last blood test (every 2 weeks because of the methotrexate) the nurse told me my last blood test was unstable so hoping I'll find out more on Tuesday. x

bunnycaramel profile image
bunnycaramel

Hi

I am classed as sero positive.

As mentioned earlier that sero means blood negative means no abnormalities found in blood test.

However as mentioned earlier I was negative to rheumatoid factor but positive to anti ccp test which is a newer test whereas rh factor has been around for years.

Seronegative isn’t just about anti-ccp and rheumatoid factor, both blood markers for rheumatoid arthritis, it can also include crp and esr, both measures of inflammation in the body. In the case of seroneg RA, the term tends to primarily refer to the first two markers being normal rather than all four. For PsA (psoriatic arthritis), most patients are completely seroneg, meaning that not only are their anti-CCP and RF normal, but their measures of inflammation are pretty much normal, too. In someone mid-flare with RA, the expectation is generally that CRP and ESR will be significantly elevated for most patients, whereas in a PsA flare there may be little elevation at all: my bloods are always entirely normal, even with something swollen 5 times the size it should be, which is one of the main reasons my arthritis was missed for 20 years, and both the bloods and the delayed diagnosis are not uncommon for PsA. With crp, which is short for c-reactive protein, and is a widely used but fairly indiscriminate measure that can help determine if there is infection or inflammation going on, a normal level is less than 3.0, but levels can be higher than 350, so a level of 10 as you report is still pretty darn low for someone only just diagnosed with arthritis and (I’m presuming?) in a flare.

Garnacha profile image
Garnacha in reply to

Thanks Charlie, at the time of those blood tests I wasn't having a flare, in fact I didn't even know I could get them or even think about flares until December when it seemed my whole body was hurting, the results of the blood tests I mentioned were taken for other reasons but the consultant was also sent them, since being on methotrexate and actually having a flare I've had 3 blood tests but not seen anyone to find out what the results were, all I know is when I went for the last one on the 7th January the nurses said that my previous blood test was unstable so no idea what that means until hopefully tomorrow and fingers crossed that the one taken on the 7th are ok. There's so many abbreviations to understand & what relates to what think I need to revise more 😉 but this group is really helpful in explaining them all.

nomoreheels profile image
nomoreheels in reply toGarnacha

We have a list of abbreviation often used in our world, you'll find them under Pinned Posts (to the right on my iPad). You'll need to tap on See all>, it's under the heading Common abbreviations and acronyms on this community 18 posts down, or follow this link healthunlocked.com/nras/pos...

Garnacha profile image
Garnacha in reply tonomoreheels

brilliant, thank you, I'm also still learning how this site works 😅 so all information is very welcome x

HanaleiBa profile image
HanaleiBa

MCV slightly raised can also mean folate deficiency which is common with methotrexate. I have that and kept taking more b12 to no avail and had super high B12 in my labs so was confused. Then, I went to a functional doctor and they clarified the folate issue. As soon as I started supplements for folate (methyl), I felt better. I’m still slightly raised, but better overall.

Garnacha profile image
Garnacha in reply toHanaleiBa

Thank you, I was given folate acid tablets to take, one a week of 5mg, I have read somewhere that some people have to take more so perhaps that's the answer to it x

HanaleiBa profile image
HanaleiBa in reply toGarnacha

I read that, too. I take the 5mg tablets a few times a week LOL :). Haven’t had issues and always know I’m on it. When I start forgetting, I get terrible fatigue, etc. You might try methyl folate. Usually what they give you is regular. Half the world has a gene mutation and they do better on methyl. That’s what I have.

Garnacha profile image
Garnacha in reply toHanaleiBa

ooh that's interesting, thank you, perhaps tomorrow he'll increase it or prescribe me methyl folate, thanks for the heads up x

193639 profile image
193639

Hi there,

You would need to be a Philadelphia lawyer to decipher your replies, too complicated for me. I have RA and sero-negative, my sister also has RA and sero-positive. My understanding is, if your positive your inflammatory markers in your blood are corrosive therefore some people’s joints get twisted like the fingers for example. If your negative you do not have corrosive properties within your blood.

Therefore, you can have RA with sero positive and negative blood...

Take care

Garnacha profile image
Garnacha in reply to193639

hahahaha, yes I know, think I need to enrol on a lawyers course 😂 thank you though x

Mattsdog1 profile image
Mattsdog1

HI well I have been diagnosed as seronegative and have arthritis (Rheumatoid) I believe it’s when the antibodies don’t come up in blood tests but they know you have it and it could turn positive as negative is slightly better than positive

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