Sero-negative to positive RA factor?

Hi folks,

I've seen reference to sero-ve changing to sero+ve. My rheumy nurse says it doesn't happen so there's no point in getting another RA factor test.

My question is, does RA factor used in blood tests show negative but some time later, show +ve?

Or once you have it, can it go on it's own?

Thanks,

M

24 Replies

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  • Over the years people on here has said that their RF factor results have changed from positive to negative & vice-versa. And certainly in the literature it states that the RF factor can become positive later in the disease process. Which is logical as it is an antibody test, and antibodies in your blood stream can change easily.

    But really the question is whether you need to bother? Once diagnosed does it matter whether you are negative or positive? Some say that how high it is might predict how bad the disease will be but that doesn't seem to hold true from what people on here say. I've never bothered to ask to be retested as seems irrelevant now.

    I guess the only reason to be retested is if you were refused a diagnosis of RA based on being sero-negative. And then if symptoms do tune you might want to be retested to force the issue.

  • Hi Helix

    Thanks - that confirms my memory but the nurse was fixed in her opinion and I had other questions so I didn't want to aggravate her!

    The reason for testing again is that they appear to have dumped me from the 'can help' to the ' I dunno what to do' group. If I can show up as RA, I think they might persist with RA treatments but I'd need to get much worse with my symptoms.

    My diagnosis has always been Inflammatory Arthritis, over the past 4 years, with OA added as an incidental thought.

    Indeed that's the case, that because I'm RA factor negative, it's not RA. They do seem to be a bit rigid with it...

    I'm still hoping that after getting on for 5 years or no control of symptoms, I might just find one treatment which works. Currently on Etodolac which has provided some respite.

    MJ

  • Well GPs can do that test, so perhaps if you get on well with GP then ask him/her to retest?

    Or if you have £50 to £90 to spare then get it done privately?

    privatebloodtests.co.uk/pri...

    Or

    medichecks.com/rheumatology...

  • Thanks! Nice pointers to not rely on the GP for a test - mind you, I've not asked if they can do it - could be worth a shot...

  • Hi Mickey,

    If someone is tested very early on in the progression of the disease then it may be that it is just too early to see the antibodies. When tested later, they may appear. Technically, you are sero-negative or sero-positive and that doesn't change but of course if you are diagnosed early then you may be given a diagnosis of sero-negative RA but it isn't really that. How long it takes to be able to detect them is another factor involved. How long do you wait before deciding sero-neg or sero-positive?

    Hope that helps

    Beverley (NRAS Helpline)

  • I was seronegative for about 29 years. Last year Rheumy told me I had become Seropositive. I was told it can also happen in reverse too.

  • Yes, that's what I'd understood. Hmm...

    Did any of the drugs work for you? I'm still on HCQ and have been through MTX & LEF too. No effects. MTX was a bit rough after the injection, but better the day after.

    It's an evasive disease!

  • It isn't a necessary part of the diagnosis of Rheumatoid Disease. There are other blood tests and of course, the clinical picture which is probably the most important part.

    Are you seeing a rheumatologist? I think your concerns need to be discussed with a rheumatologist especially as you seem to suggest that you are only being treated with a NSAID?

  • Hi OT,

    I've been through HCQ, MTX and LEF to no effect with my rheumy. The NSAIDs do have an accumulative adverse effect so I'm trying not to get to bound to them.

    It seems like they have given up on my case as I'm one who doesn't respond. Even steroids IM are not working now.

    I have talked with them and said I feel I've fallen into a therapeutic gap in treatment and they didn't disagree.

    MJ

  • Hello MJ

    I once read an article by a rheumatologist (for other rheumatologist) who said they need to stop using language such as; “the patient failed on X drug.” The patient did not fail anything, the drug/treatment failed the person. Medicine is not an exact science. We don’t fit into neat little boxes.

    I feel for you, I really do. As I’m sure you know, blood tests are only one part of the picture.

    Take care.

  • Yes, your rheumatoid factor can change. People with RA and a negative RF- can change to a positive RF+ overtime.

    Health Canada does not rely as heavily on the RF test to diagnose seronegative or seropositive anymore. They now rely on the unchanging anti ccp test.

    Your RF test can be positive if you have an extreme infection, Lupus, RA , etc...so this is why the unchanging anti ccp test is now what tells you if you are seropositive or seronegative.....this is the explaination my rheumatologist gave me as why my positive RF+ test turned negative RF- .

    Going from a negative RF to a positive RF is very common with RA...but going from a positive RF to a negative RF doesn't happens if you have RA, Lupus, etc and this is one of the reasons that my diagnosis changed to Reactive Arthritis... my diagnosis changed 4 times now...though, I'm not holding my breath that this is the final diagnosis.

  • Mine changed !

  • Hello Mickeyjoints,

    I had a look at your history and it is a bit bewildering. Don't want to be intrusive but strange cases always interest me. So you have been on all these meds, that non have worked. You are seronegative, does this mean you do not have CCP antibodies? What about your other markers are they all normal? What are your symptoms? Have they changed during the years?

    Seronegative RA seems to have many unanswered questions still hanging to it. I do hope you soon find something that helps. All the best. Simba

  • Hi Simba,

    Yea, tell me about it! I'm beyond bewildered now, more like resigned. Happy for you to have looked at previous posts :-)

    I have the impression the first Dr I saw was not convinced in either direction about what condition I have, but settled on an inflammatory arthritis. He tried the HCQ & MTX, as mentioned. Steriod injections worked at that point so there was an indication that it was an inflammatory condition.

    My last CCP was normal. ESR has always been around 2 points above the upper range, so nothing to write home about. Otherwise a normal blood picture.

    Symptoms are stiff hands in the morning, but only for around 5 minutes as I exercise to get them moving. I'm frequently flexing my hands during the day as they feel like I'm wearing rubber gloves which are one size too small.

    If I walk the dogs about half way around a mile and a half track, I start to suffer with my feet. Just sore to walk on and I stop now and again just to relieve the pressure sensation. Various knuckles and finger joints are now swollen - not too bad really.

    When stressed, discomfort and pain are worse.

    I'm waiting for a BIG symptom change so I can go along with a good list of signs and symptoms to the rheuy as evidence for some other intervention.

    One lives in hope. (Sad really, to hope for a worsening condition to be able to get some appropriate intervention!)

    Cheers,

    MJ

  • Thank you for your reply MJ. One more question🤔What else have the docs examined? Your symptoms can be connected to other issues, at least I would imagine you've gone through other tests?

  • No, not for other conditions.

  • This I find very strange since thyroid dysfunction in perticular gives very much the same symptoms. What about deficiencies was your B12, D and different microminerals checked? Your hormonal balance and so on. It seemes so peculiar somehow, what I often read on the forum that when the doctor really has no substantial evidence to do a RA diagnosis, meds are still given instead of continuing to search for the cause of the symptoms. 🤔 Perhaps you should go to an endo?

  • Interesting... I've been to a nutritionist and have had a selection of supplements but perhaps I should ask her about thyroid issues. She's pretty good.

    More invasive/thorough investigations might have to wait...

  • You can actually get a pretty good idea just by taking your morning, afternoon and evening pulse and body temperature. raypeat.com/articles/articl...

  • Has your GP had any other ideas?

  • Thank you all for your thoughts on this issue. Even with this limited number of responses I am reminded that we all react differently. It comes and goes for some, stays for some and takes an age to show up for others. Frustrating.

    And agreed, it's the drugs failing us.

    MJ

  • Not so the meds as much as medical knowledge🤔

  • I tested negative at the GP ,third rheumatologist tested again as he said lots of times it reads negative and I was positive...

  • My RF and CCP were both negative. However, the RA attacked me fast and quick and I collapsed within just a few weeks. Then I almost could not walk. It took about a year for me to walk a bit more stable.

    Over here, if one's symptom is not serious, normally the rheumy will not prescribe any DMARDs.

    Amy

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