I have recently been told I have arthritis and prescribed Methotrexate. I was just looking at the letter to my doctor and it looks like the diagnosis is "Sero Negative Arthritis" I am confused at this as my initial blood test showed Rheumatoid factor raised.
I don't want to take the medication if I don't really need it due to the side effects. Does anyone have any experience on the Sero Negative?
I am wating for further bloods and an Xray result I am not due to see them again for 6 weeks.
Any thoughts?
Thank You.
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DBT776
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You can still be prescribed treatment as the Rheumatoid factor does not show in the blood but the damaging inflammation does. I'm sero negative on lefunomide steroids and TCZ infusions
Yes. Sometimes its border line. Ask on your next appointment if it's a typo or nit though but the treatment is the same if you have all the clinical signs if RA plus high infjammation( Crp or Esr, ) the rheumatologist will usually consider it RA xxx loads of advice on the National rheumatoid arthritis website NRAS.org.uk I think !
Thats not really accurate the RA factor does show up but it does not allow that some one has the disease or if its negative that they don't. I'm positive with pANCA antibodies. The CRP can indicate any form of infection so its taken with other symptoms like swelling, fatigue etc.
I disagree there are many papers Miller etc and indeed the fact if you look above , NRAS looking for tests. The initial test for RA factor is unreliable 59% accuracy . So many folks are told they are negative when positive and vice versa I believe. However clinical experience and judgement by clinicians is the main diagnostic tool , stiffness swelling, time getting out if bed, hand squeeze test, scans, xrays ( sometimes) and inflammatory markers xx
I think you'll find thats exactly what i said. ! You can like me have the disease, and test positive or have the positive factor and not develop the disease or test negative and have the disease. Its not the test is unreliable but that the condition even now is not fully understood which means there is no one size fits all medication. I've had it for many years, all tests positive but only in last 10 did it really affect my life. I've had all sorts of tests and its not just the conditions you mention as my RA affects my blood, and lungs. RA is different for everyone.
It is the case that all good GP's will do a blood test for the RA factor based on clinical experience the same as testing for any other condition but the inflammatory marker CRP is affected if for instance you have a cold or bug. Hence its hard to judge if a high marker is solely down to the level of pain, swelling etc or the patient has a bug.
My Rh factor has never shown up. My CRP and Sed rate is always normal, even with warmth, redness, and swelling present. The only thing “positive” that has shown up was in a joint fluid analysis and the Vectra DA test
If the Rheumatoid factor was only just above normal then you may well have been classed as sero-negative anyway. Or its just a typo and meant to write sero-positive!
Lots of people on here are sero-negative, it really doesn’t make a massive difference as there is so much variation between people.
Hi there and welcome, getting prescribed methotrexate (MTX) early in your disease gives you a good chance of preventing joint damage, so that's good. I hope you do well on it.
I am seronegative too and take a new group of medicines called JAK inhibitors, having been through the more traditional RD medicines including MTX, before starting this one.
If you don't mind me saying 😀 the correct term is either rheumatoid arthritis (RA) or rheumatoid disease (RD). Calling it 'arthritis ' tends to suggest osteoarthritis, aging of the bones, which many people experience as they get older, it is quite different to RA/RD.
You will find the forum really helpful, so please do ask questions , there is usually someone who can help. Best wishes.
Yup. If you tell anyone it's arthritis you're going to get comments like "oh yes, my Granny has that in her knees" or they waggle fingers at you and say "me too". The red mist decends...
I am starting JAK inhibitors after many biologics eventually failing .
How do you find this new drug . My worry is weight gain as. Have experienced this with some other drugs. Really the biggest worry is does it work. I know everyone is different but I would like to hear from someone who is taking this drug.
Hi, I've been on baricitinib and had a bit of a mixed time with it. It's a very clean drug, in that it causes little in the way of nausea etc . But I've had a lot of minor viral and fungal infections and a bout of hand, foot and mouth disease and it reactivated my herpes simplex. So the dose was cut from 4 to 2 mgs day and I've had joint,tendon problems since then.
But well worth giving it a go as it works well for many people.
Thank you for your reply. I am going to start Tofactinib but I suppose they are much the same only different manufacturers . The reason I asked about the weight is I am having a knee replacement the end of April I will be inactive for a period f time. I have had some success from biologics but but they run their course so another change.
Not wishing to confuse things further as you've probably already had your question answered (and I'm only a novice at all this stuff myself) but I have negative RF and positive anti-CCP which my rheumy refers to as "sero positive" yet I'm fairly sure I've seen others describe as "sero negative"!
As far as I can understand (so far), and I'm sure others will correct me if I'm wrong, the anti-CCP is a more specific indication than the RF but you can have one, both or neither(!) and still be diagnosed with RA/RD depending on other clinical signs and symptoms.
Either way, the bottom line is that initial treatment recommendations seem to be pretty much the same regardless so the sero +/- probably isn't worth focussing on too much, although it would certainly be helpful if things were a bit more clear
I think your right. To be honest the consultant was so thorough it wasn't until I came home my questions started to crop up. He didn't mention the Sero Negative to me it was when I looked at the letter for my doctor I started to get more confused. Thanks for your help.
I have sero negative arthritis with rf negative but it doesnt mean there is no arthritis. Meds work for some ppl better than others its a case of trial and error. Hope you feel better soon. This forum is great for advice and lots of love and support x
Whether you are sero positive or sero negative you need to take the meds. If you don’t take them you risk permanent damage to your joints and the RA spreading to your heart and lungs. It can take a while to find the right combination of meds for you.
Thanks Luna20, this is what I am coming to realise I do need to take he meds. The side effects worry me a bit and Also very busy with work and a show I am in so I have been quite reluctant. However reading all the info I now accept my long term health is more important.
That is what I realised. What dose of methotrexate are you on? I'm on 20mg, which I believe is quite high, and also on hydroxychloroquine (at onset my symptoms were very severe, i was unable to work or do any household stuff). I have no bad side effects. Are you taking folic acid? That counteracts side effects of methotrexate. If your symptoms get very severe they can put you on a daily dose of steroid until the RA drugs start to work (it can take a few months) - that is what they did with me. The steroid was amazing- I felt like normal again, but it really is only a short term solution. Now I'm off the steroids my symptoms have returned, but not as bad as they were before.
I’m also seronegative which seemed to take longer to diagnose as I have no inflammation markers showing in any bloods, but I was so poorly. I couldn’t even brush my own teeth and do the stairs my kids were dressing me.
After months of steroids I was finally diagnosed by ultra sound because again my xrays came back good.
I stated methotrexate in September last year and so lucky that I have responded so well with no side effects. My Rheumy said at my last appointment I was in clinical remission and have the lowest DAS he’s ever seen in only 3 months of treatment.
I still get occasion morning stiffness but more or less pain free.
Please take the meds, there no way to avoid it. I’m lucky first one worked but I know a few people have had to try a few.
A heartwarming post and I love your name, I'm a red head myself or a ginger as we call us in Scotland.
I was diagnosed Sero negative in 1987 and was such until 2013, when I became Sero positive. The treatment I had while sero neg continued and still continues today. Even when a patient is Sero neg, their RA can still be erosive, as mine was. The drugs we are prescribed is to prevent the damage to our joints.
Hi im similar to Poemsgalore as was diagnosed with sero negative inflammatory arthritis in 2000 after a long time trying to get answers. I was started on Methotrexate & treatment was exactly the same as sero positive. My disease progressed & within 3 years I was in Biologics & then at one appointment a dr mentioned sero positive RA I said no I’m negative. My RF had changed to positive but I hadn’t been informed as the dr said it makes no difference to treatment.
Also as someone else pointed out I believe they go more off Anti CCP antibodies these days than Rheumatoid Factor. It’s an indicator & that’s all really.
Hiya DBT776, welcome. I haven't had chance to read through the replies you’ve received so if I'm repeating anything I apologise. It might help to understand that Rheumatoid Arthritis/Disease is categorised into two groups... seropositive & seronegative. Seronegative means that two of the tests you’ve had, Rheumatoid Factor (RF) & antibodies to the more sensitive cyclic citrullinated peptide (anti-CCP) have shown you have low or no antibodies for either. Actually because you have a low figure RF result, which would be 14 or less, it could be considered as negative because 'normal' people (those without any other RD symptoms) can test positive for RF up to or around this figure.
Blood tests form only part of the picture though, symmetrical joint inflammation, redness around the affected joint & pain, plus morning stiffness that lasts around an hour, also do. This is why it's good your GP has recognised your symptoms, requested blood tests, is aware of the two types & of course referred you to Rheumatology. So, I'm afraid the meds your Rheumy has prescribed have been so for a reason. MTX is a very good med for many, the one most often prescribed at diagnosis. I've been on it 11 years, the first year tablets & injections ever since. You will also have been prescribed folic acid, it really helps if you have any of the more common side effects. Hopefully once you're past the 12 week period (the time it usually takes for it to be effective) you'll feel somewhat better, though you may notice some improvement in the weeks before. You'll probably have been asked to have blood tests every fortnight for 6 weeks or so then if all is well you may be asked to have them done each month or so. This is called a drug monitoring blood test & is to keep an eye on various things, to see if you are responding to the MTX, that inflammation is reducing, that it's not affecting your liver or kidneys or your white & red blood cells etc.
Many here who had a delay in diagnosis, sometimes years, have reported that because their bloods for RF & anti-CCP tested negative they were told they were ok, as you know this can be far from the truth.
Also, it was at one time considered that those diagnosed seronegative had a less serious prognosis though this thought is changing. It's also possible that those diagnosed seronegative could sometime in the future be diagnosed seropositive.
Can I just mention that rather than calling it arthritis you change to Rheumatoid Arthritis or even better Rheumatoid Disease? Thing is because 'arthritis' tends to be understood as being Osteoarthritis, the more common wear & tear condition, most often age related & quite different from the autoimmune disease you've been diagnosed with. It will save you from people saying that they, or their neighbour's aunties dog have that where in fact they'll be more likely to have OA. It is possible to have OA as well as RD, usually secondary & it can be bloomin painful if not well medicated believe me as I have both, but it is quite different & treated differently.
As I say if any of this has already been covered I apologise but hope anyway you've received plenty of welcomes! 😊
Thank you nomoreheels - you've explained why I'm seronegative (double!). Of all the blood tests I had, only the CRP was raised and that was 46. I've been on Methotrexate for about 6 months and haven't (so far) had any adverse effects. I hope you'll be the same.
I have had not only the symptoms but a strong family history of RA. Like some one said in a reply, the rheumatoid factor doesn't show up or is border line like mine but the inflamation has done a great deal of damage already. Sadly here in America aero negative is not recognized at all. What the Dr. Will tell a patient is you don't have it and let you go without prescription.
I’m in America and my rheumatologist diagnosed me as seronegative RA and started treatment within 3 months of my first visit. This was in spite of all tests being negative. He told me 25-30% of RA patients do not have inflammation markers in their blood. He was right on target, as the relatively new Vectra DA test (measures biomarkers in the blood) showed I was in the Moderate category, even while on treatment. I now take Orencia by infusion.
The statement that seronegative is not recognized in America is a broad categorization and frankly, inaccurate. I would encourage seronegative patients to suggest this test to their rheumatologist. Insurance doesn’t always cover it but Medicare does. As it has become more widely accepted more and more plans are covering it. It was validating to finally see in black and white I HAVE RA!
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