What is Cero-positive?

[Twitty999]

Hi I'm new on here & only been diagnosed about 3 months....can anyone tell me the difference between being diagnosed 'Cero-negative' or Cero-positive....I had a high Cero-positive result & not sure if it means my RA will be more aggressive?. I am on Methotrexate & no side effects

[SoulmanPaul]

Hi. Being diagnosed as Seropositive means you tested positive for Rheumatoid factor. I'm sure someone more expert than me will give you a fuller explanation but from what I've gleaned it may well mean your RA is more aggressive. Glad you're doing ok on Mtx

Paul

[milliewin]

Hi yes glad you have no side effects. I have been on it for about 4 years now and I have only developed toxicity to it once but just had to come off it for a while. The only minor side effects I get are mouth ulcers!

Best wishes, Sarah

[hornet2525 in reply to milliewin]

Hello are you not taking Folic acid with the methotrexate. Take is daily and you should not get ulcers

[milliewin in reply to hornet2525]

Hi, thanks for advice anyway but yes I do take the folic acid!

[MezzyD in reply to hornet2525]

I am new to this group but am finding it very helpful and reassuring oddly there are people out there with the same issues. This can be quite an isolating illness sometimes. Anyway wanted to pick up on this as my consultants said taking FA everyday makes the methotrexate less effective? Has anyone else been told that?

[nomoreheels in reply to MezzyD]

Welcome MezzyD. Really only if taken the same day as MTX, that's the general rule as it's thought the efficacy of MTX is reduced. This is because MTX is a folate antagonist & isn't able to determine what it targets. As FA is prescribed-off licence when co-prescribed with MTX there aren't any prescribing guidelines hence Rheumy's differing thoughts. I'm on 17.5mg MTX injections & take FA 6 days a week, just not MTX day.

[MezzyD in reply to nomoreheels]

I am on 20mg MTX injections among other things so i should be taking FA everyday apart from my injection day? I am been told to take FA two days after my injection and just once for that day. I have noticed quite a lot that people get different advice. Thanks for the info

[nomoreheels in reply to MezzyD]

Sorry, I missed your reply MezzyD. No, you shouldn't be taking it every day, you should take your FA as prescribed by your Rheumy, his preference is you take 1 x 5mg two days after you inject. If you take any more your script won't cover it because you'll only be prescribed 4 tablets per month (once weekly). When I first started MTX I was prescribed it just once a week the day after MTX day then that was increased to the day before too so twice a week. My current Rheumy prefers all her patients to take it 6 days a week, just not MTX day. So as you see it varies, Rheumy's have their own preferences & of course it can also be down to if you have various side effects, it being prescribed to help ease them. Obviously if you're having side effects then do ask your Rheumy if he thinks taking FA more days may help ease them.

[Twitty999 in reply to nomoreheels]

Thank you..that is really interesting. ..I don't take Folic on my Methotrexate day..but never knew why!

[nomoreheels in reply to Twitty999]

You're welcome!

[Twitty999 in reply to MezzyD]

Hi..I'm also new on here I find it really helpful. ..My Consultant told me to take Folic to reduce any side effects but never heard that it can reduce the effects of Methotrexate? ??

[Twitty999 in reply to hornet2525]

Yes..I do take Folic Acid 6 days a week..supposed to minimise side effects?

[Kim-NRAS NRAS]

Hi there

You can read more about this subject on our website here: nras.org.uk/seropositive-se...

If you have any further questions you can call the NRAS Helpline on 0800 298 7650 Monday-Thursday 9:30am-4:30pm or email any time to [e-mail].

Hope this helps.

Best wishes

Kim

[Twitty999 in reply to Kim-NRAS]

Thank you Kim..that was very informative ☺

[nomoreheels]

Hiya Twitty999. It's more commonly seropositive or seronegative. The two types of Rheumatoid Disease (RD or RA) can be differentiated by the presence or absence of an autoantibody or protein produced by the body when it starts attacking the immune system, this is the Rheumatoid Factor (RF). You can have RD without a positive RF result (seronegative) but it's presence helps diagnose the type of disease. Over 80% of people with RD test positive for RF (seropositive). The anti-CCP protein will also be positive in someone diagnosed seropositive. When you consistently have a negative test for RF you're seronegative.

Whilst it's not always the case those tested seronegative tend to have a milder form of the disease. That said it can make a big difference as to how things pan out if you're diagnosed promptly & respond well to the meds whether seropositive or seronegative so maybe take some comfort from that?

[helixhelix in reply to nomoreheels]

Not sure what you wrote was exactly what you meant to say? It reads as if you meant that if you have positive RF you will also have positive anti-CCP.... but think you might have meant to explain that both positive RF and positive anti-CCP can be described as sero-positive?

[nomoreheels in reply to helixhelix]

An alternate way of saying what I mean is if you're diagnosed seronegative you won't test positive for anti-CCP, or it's less likely, there will be a small number with confirmed RD who will have a negative RF yet test positive for anti-CCP. So I guess you could change it to the anti-CCP protein will usually only be positive in someone diagnosed seropositive.

[helixhelix in reply to nomoreheels]

Well I'm negative RF and positive anti-CCP, which my first rheumy said was very common.....

[nomoreheels in reply to helixhelix]

Not sure then, unless you had low levels of anti-CCP antibodies? Can't explain your Rheumy saying it was very common, it goes against what I've read. So were you diagnosed seronegative or seropositive?

[helixhelix in reply to nomoreheels]

No, high anti-CCP. My first rheumy said she only viewed anti-CCP as sero-positive now. Which echoes the article suzannedale gave a link to.

[nomoreheels in reply to helixhelix]

Yet the article also states that seronegative means that tests don’t show the presence of these antibodies (anti-CCP) in your blood. This was what I understood.

[Hidden in reply to helixhelix]

This might explain it better.

arthritis.org/about-arthrit...

[Bookworm55 in reply to Hidden]

Very interesting article.

[Twitty999 in reply to Hidden]

Thank you, that was a bit technical but very interesting & informative ☺

[Hidden in reply to nomoreheels]

I think the confusion is that Rheumatologists don't rely on the RF factor as heavily as they once did. The RF test isn't as accurate as the anti- CCP test.

The anti- CCP test results are now what makes you seronegative or seropositive. So a positive anti-CCP test is seropositive & a negative anti- CCP test is seronegative.

A person who has a positive anti-CCP will never change into a negative anti-CCP when retested....but some people who tested positive with the RF can change to a negative RF when retested.

This was the explaination given to me as to why I went from seropositve RA to seronegative RA when retested. My rheumy had only relied on the +/- RF test. If he used the +/- anti-CCP test, then I would have never been diagnosed as seropositive.

[nomoreheels in reply to Hidden]

I had a comparatively easy ride Sue because I was high positive for both when my GP first tested me & then again a fortnight later when retested as part of diagnosis & then again 3 months later the first time I saw my Consultant. Obviously the levels weren't going anywhere so guess they each needed their own for my medical records.

That said I think here in the UK I think most GP's rely on RF only to refer due to the comparatively high cost of the anti-CCP test, they leave that to the Rheumy as part of his diagnostic tools.

This is an interesting little snippet, going back a ways but partly relevant pulsetoday.co.uk/news/clini...

[Hidden in reply to nomoreheels]

I too was a classic case of seropositive RA. I had a high RF & symptoms observed by my rheumatologist, including a bone erosion in my foot.

Relying on the RF test along with the experience of the rheumatologist is quite bothersome to me now. The RF antibody can occur in patients with many other conditions, it is always present in Lupus and it is also present in an infection. Anti-CCP is more specific for RA and is becoming the preferred test in North America. I'm sadden that the UK still prefers the RF test because of cost...surely it can't be much of a difference?

I never searched out how to cure my seropositive RA... I fell arse backwards in discovering what was really happening to me. Today my final (?) diagnosis is severe Reactive Arthritis that mimicked RA. I might be one of the unlucky ones who have this condition as chronic.

The majority of people that show a positive RF have RA....but what about the small percentage of people who show a high RF+ & get the label of seropositive RA diagnosis. When if fact they don't have RA? Surely I'm not the only one that has been misdiagnosed using the RF test?

[nomoreheels in reply to Hidden]

Twinnie! I also had bone erosions in my feet when diagnosed, but I guess many do.

Damn, I was hoping you'd be free of RD once you'd had your corrective root canal treatment, I'm so sorry Sue.

I was wrong re RF... GP's automatically take RF if on examination their patient has symptoms according to NICE Guidelines but should take anti-CCP in circumstances as follow - Consider measuring anti-cyclic citrullinated peptide (CCP) antibodies in people with suspected RA if: they are negative for rheumatoid factor, and there is a need to inform decision-making about starting combination therapy.

The cost between the two tests is negligible, RF is £11.25 & anti-CCP £18.51 but of course they have to factor in the costs of other necessary tests, FBC, ESR, CRP. That said the guidelines are clear so from that you'd hope

So did you not have anti-CCP taken?

[Hidden in reply to nomoreheels]

( I have to mention that I don't live in the UK.)

Oh Nomoreheels, you just made me realize that the medical profession has let me down again.

I didn't have bloodwork done by my 1st rheumatologist until 2 years of seeing him & only because I had added mtx to the mix.

June 2014, my first rheumatologist only looked at the positive RF test that my GP ordered & the xrays of my feet. He then examined me and said seropositive RA. He never ordered any blood test nor did he order any test messuring my inflammation either. He was sure the hydroxy would "kick in" . I then added sulfa in the summer of 2015 And still no blood tests were done. He was sure sulfa & hydroxy would "kick in" By Jan. 2016, I was going downhill fast and found another rheumatologist.

November 2016, my 2nd rheumatologist ordered a list of bloods to be done & it was discovered that I was negative in both the RF & anti-ccp test. But my inflammation markers were off the charts. A normal CRP (hs) is below 1 mine tested at 10 and this suggested a major infection or seronegative RA (depending on rheumy examination)

I was on mtx for 4 months when I saw my 2nd rheumatologist & he was surprised at my inflammation levels & the lack of bloodwork.... then the root canals happened.

Anyways, today 8 months after the root canal extraction & redo, my inflammation levels are normal. My rheumatologist final (?) diagnosis is reactive arthritis due to infection. He says I never had RA, my immune system went out of wack because of the longterm chronic infection.

I remember being excited & secretly hoping that my RA could disapear after the dental work....but truth be told, I am left with secondary OA caused by chronic inflammation. Hopefully this reactive arthritis will soon disapear before anymore damage is done to me.

Turns out severe reactive arthritis can mimick RA and the same drugs are used in severe cases. So now I'm off mtx & hydroxy, but I'll be on sulphasalazine for awhile it seems.

Who would of thought?

Thanks for listening to me

Sue

[nomoreheels in reply to Hidden]

It beggars belief what you've said Sue. What Rheumy relies on another medical professional's blood test when diagnosing, that just doesn't happen, they always order their baseline blood tests no matter what, well any one worth their wage is anyhow. Not for two years as well! Did you even have a chest X-ray before starting MTX to check your lungs were in a fit state to start it? So you're saying that all that while you'd had further DMARDs added but no drug monitoring bloods? Here when you start a new DMARD, any of them, you have at least fortnightly blood tests for a minimum of 6 weeks, or I have, & only when they're sure you're not reacting negatively in any way do you go onto monthly or longer drug monitoring bloods depending on which DMARD.

Your second Rheumy did as would be expected at your first appointment with him, RF, anti-CCP & full blood test plus inflammation, his own baseline tests for a new patient.

Secondary OA isn't that unusual but are you being medicated for that, NSAID, pain relief etc?

[Hidden in reply to nomoreheels]

It took me awhile to respond to you...I'm upset & I feel broken at what has happened to me. I needed to absorb what you wrote.

Nope, no chest xray was ordered for me when I started mtx. I didn't have a chest xray until I saw my 2nd rheumatologist, 4 months after being on mtx. Looking back, I think my 1st rheumy was in "retirement mode" . You know, he had been practicing rheumatology since the early 70's and assumed he Knew everything & saw everything.

No, I'm not being medicated for this dang OA. I'm medicating myself with BC BUD, something that I never ever thought I could or would do. It's legal here...but it's not regulated by Health Canada until July 2018.

I found out about me having this OA as an after thought.

My rheumatologist's assistant was going over with me my xrays & ultrasound results. She said,

"As you know, all the deformities of your hands are Osteoarthritis..." I was stunned because this is how I found out about my OA. I just looked at her and thought, "but this swelling of my hands is why sulpha was added to hydroxy" I wish I would of said that, but I didn't. I was stunned.

I was a chain smoker in my youth and kicking that horrible habit, 25 years ago, always filled me with pride. I never wanted anything but clean air to fill my lungs... But the pain of my joints that were once diagnosed as "RA" is now being called "OA" drove me to BC Bud.

You know that I live in Vancouver BC. So Medical BC Bud is legal....but it's not regulated & it's something that I didn't want to do.... but I did...and still do.

You get your Medical Cannabis card approved over the internet. As long as you live in Canada, an American Doctor online can diagnose you... doesn't sound legal, but it is a loop hole here. I do believe in medical pot, it needs to be studied scientifically & it needs to be government regulated. I don't agree with all the "pot shops" around Vancouver that sell to anyone & everyone who goes on the internet to be "diagnosed"....grrr...

Anyways it helps & controls the pain. So I find myself self medicating this OA pain with BC Bud...something that I never wanted to do.

[nomoreheels in reply to Hidden]

I'm sorry it's affected you like that Sue, but I hope you realise that wasn't my intention, I was just highlighting your experience with the first Rheumy in particular, the guidelines we have & my experience. I do wish you'd have checked your guidelines too, but of course understand you wouldn't have had any reason to if you didn't have any indication it wasn't right, that tends to come with experience not when you're newly diagnosed, unless you're a nosey Parker like me. Funnily, at my Rheumy appointment last Friday I apologised to mine for asking so many questions, I was asking more than I normally would because of what she needed to do & I wanted to know why she was checking out my shoulder symmetry & other things. She was injecting a localised steroid & was doing it differently to her Registrar, going in from from the front instead of the back, different steroid etc & her response was that she was far happier discussing treatment & answering any questions than say another patient who just sits there & says nothing. That it was preferable as then she was sure I understood & it's far more likely that an enquiring patient understands their condition more fully & that she forms a better relationship with them. Well, she's correct of course but I think that is more likely to come with time, the longer you're diagnosed the more your 'own' your condition perhaps? You would just have trusted that first Rheumy, thinking (or trusting) he knew what he was doing & that it was correct I guess.

Anyway, as long as the marijuana is 'good', it's helping & you are a sensible woman thankfully, it's then so be it, but it shouldn't have needed to be your only option. The assistant knew what the cause of your hand issues were, why didn't she take the initiative & ask if or suggest you needed meds to easy the pain & inflammation? Ok, maybe only she could only offer NSAIDs & maybe physio/exercises would have helped but that makes it more simple doesn't it? I'm so annoyed at your mistreatment, that you've had no other options because of the shortfalls of a medical professional nearing retirement & being slap happy with patient's treatment & possible wellbeing. x

[Hidden in reply to nomoreheels]

Oh, you never upset me. I wrote that wrong. I'm upset at how I was treated & how I was put at ease whenever I questioned my first rheumy. Whenever I asked a question, he would brush it off and say that I had mild RA. He was able to put me at ease & I would end up thinking, "I guess these snowballing symptoms are normal and will go away soon"

When my hubby's RF test came back positive our GP was just as shocked as we were. He was sent to another rheumatologist & I attended his appointment with him. Wow, what a difference in treatment plan. He was given hydroxy but he also had loads of tests to be done. Xrays,bloodwork & ultrasounds and such. He didn't rely on James positive RF test. He didn't think James had RA, and he sought out what was happening. Gosh, I wish he was my rheumatologist.

Anyways this made me go back to our GP and seek another rheumie's opinion. So my name went back on a referral list, and being that I already had a rheumy, I wasn't considered an emergency.

Yes there are treatment plans & rules clearly laid out by Health Canada. I wish I looked it up.... I wish my first rheumy looked them up too.

Now I have to "pull up my socks", wipe away the tears and live the best life I can. I am thankful to have a wonderful family who love me, even when I'm hopping mad about all that has been done. I am working on getting over this anger. Anger eats you & I don't want to waste anymore time being mad. Life is too short, I want to have fun now

[nomoreheels in reply to Hidden]

I think that's a plan! Get on with things, there's little point getting angry now about what's past, though some (me) might have been tempted to haul him over the coals for the treatment received.

[Twitty999 in reply to Hidden]

Wow..you have had a rough journey Sue..hope it gets smoother for you!

[Hidden in reply to nomoreheels]

I was diagnosed sero-negative way back in 1987 and stayed that way until 2014, when I became sero-positive. Things became a whole lot worse after that. Drugs I couldn't have as a negative I could now have as a positive.

[nomoreheels in reply to Hidden]

Seems as though it was just as well you were tested again. Hope things are a little better now you're on the correct treatment.

[jessquilts in reply to Hidden]

This confirms what I've been told also. I am currently sero-negative. But was told that as the disease progresses that could change, and that taking action early could help slow the disease down.

[Hidden in reply to Hidden]

Poemsgalore1, You must have a good insight on the different treatments offered back in 1987 compared to now. I hope your new meds are working well for you.

[Hidden in reply to Hidden]

Certainly have. I was on various NSAIDS such as Diclofenac and Brufen. Then was given Sulphasalazine. Eventually Methotrexate and Leflunomide, which I still have. Now I also have Rituximab, which is not given to Sero-negative patients. Along with Prednislone, -methyl-Pred infusions. as well as steroid injections on and off.

[Hidden in reply to Hidden]

Also have Vasculitis. 😩

[Hidden]

Kim of NRAS has given a good link to explain seronegative/seropositive test results.

I have both RF and strongly positive anti-CCP results. Not so good but everybody is different, and the course of disease varies greatly from individual to individual.

Hope you feel improvement soon.

[Kai--]

.

If you wish to get further 'into the weeds' 🌾🌾 , Twitty999, have a look-see 👀 : 3-Part 'Serology (RF, ACPA, Anti-CCP, ANAs, ANCA) in Rheumatology' Series from Dr. Robert Coughlan's 'Rheumatology Toolbox': healthunlocked.com/nras/pos... 🙏 🍀 🌺 🌞

.

[Hidden]

I'm sero-positive too, high on anti ccp test and had it about 3 months like you, yeay twins! I asked rheumy today if it was worse prognosis as every thing you read says more aggressive but he reckoned no, if caught early enough and aims to get it into remission where you can barely feel joint pain so that's positive eh? Brilliant if you do 't get side effects on MTX too

[Twitty999 in reply to Hidden]

Haha..yes Kering, we're like RA twins 😊good to know it's not more aggressive!..I have my first Rhuemy visit next week after 6 weeks on Methotrexate. .no relief yet for my knee pain but it's probably too early yet?..I hope all goes well with you..it's a bit of a scary journey. .but great to share on here 😊

[Hidden in reply to Twitty999]

6 weeks mightbe bit early, obvs i am not dr but been on mtx bout 3 months and this is first week i havent felt sick/ tired all the time, bliss i feel like me again. Stillgot residual wrist n finger pain but no where near what it was. Felt despairing as late as 1 week ago so don't let it get you down, hope it gets better for you. It is scary isnt it?

[Voutton223]

Hi I have SLE it was while I was on steroids I took a flare My Rheumy put me on methotrexate I had no side effects either. When weened off steroids I came off methotrexate

When you can come off a meds it is better

I am on enough as it is

[marie66]

I was finally diagnosed sero negative RA after 9 months when I got to rheumatologist! GP said it's clearly not RA as it's not in the bloods! Meanwhile I got sicker and sicker and more swollen - ended up on morphine steroids anti-inflamatories, splints -they thought it was carpal tunnel- 2 minutes with an orthopaedic surgeon discounted that and he referred me to rheumatology!

I was so swollen and struggling there was no doubt it was RA but most definitely seronegative - if it was in the bloods they'd have found it quicker and saved me 9 months of pure hell but hey ho! Incidentally it wasn't all wrong- diagnosis is RA and secondary Carpal tunnel! M x

[nomoreheels]

Of course a physical exam can be enough for a GP to refer, so possibly that's why, he was confident enough from that to send to to rheumatology? Seems he got far more out the the fortnight he probably had covering Rheumatology in his GP training than the Rheumy who did years of training to specialise, the GP you saw who seemed to recognise that typical symptoms aren't always there. Begs the question why the initial Rheumy didn't seem to know that maybe you showed signs of PsA as the other two did.

Re your question, as I mentioned in one of my replies to Hidden , any Rheumy would take his own tests, if that means retesting then fine but he should never rely on a GP's or even another Rheumy's results for baseline tests when he takes on a new patient. Obviously it's a no control situation, it's entirely the choice of each one. I don't believe there's overuse by GP's because they're advised they can't refer willy nilly so they need to be sure it's necessary , that means an examination, ESR/CRP, RF & anti-CCP if it's determined necessary, though we know taking the latter doesn't always follow. It's feasible that Rheumy's don't bother with RF as anti-CCP is a more reliable test, plus examinations & full blood count may be enough in most newly referred patients. This would explain he discrepancy in RF between PC & Specialists maybe, not necessarily overuse but seen as less necessary in secondary care?

[nomoreheels]

I guess that's your answer then, she wasn't one of the better ones. This is why it's important to do your homework when choosing your Rheumy/hospital.