Negative to Positive!

Negative to Positive!

Here's an interesting little gem!

When you were diagnosed were you told that according to the Rheumatoid Factor you were either sero-negative or sero-positive?

The Rheumatoid Factor is an immunoglobulin antibody that is found in the blood of around 80% of people with rheumatoid arthritis and is a common diagnostic tool for the disease, although not a particularly reliable one. However, a certain number of people with the symptoms of the disease do not have this antibody hence they are sero-negative. That's me, for all my 23 years of disease history.

Except, perhaps not! Last week I found out that in the first few years of the disease some patients who are sero-negative will convert to sero-positive. On Thursday I was re-tested for rheumatoid factor and given the test for anti-ccp (not available when I was first diagnosed).

If I am now sero-positive this could potentially affect future treatment options. I await those results with interest and impatience.

Anyone else been down this route?

Lyn x

18 Replies

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  • sero negative, myself, but luckily an ultra sound of my hands showed them the error of relying on this test alone,, think they should do my feet too....

  • Hi Lyn. strangely enough I have never been told!!

    Having been diagnosed like you many years ago it didn't seem to matter,I am going to find out more though.

    Thanks

    mand xx

  • My gp did this blood test for the rheumatoid factor first. It was only when it came back positive that he referred me urgently to the rheumatologists at the hospital! Presumably he thought it was more likely to be RA than not, by this time!

  • Like Mandy I have never been told. All he said when I described the symptoms was "oh yes you have RA". Have since learned my PV was high never been told my CRP or ESR, XYZ kiss me bott nor anything. I asked the doctor the other day how my bloods came back last Monday, she said everything normal! Yes but.... apparently when pushed she told me my PV was back to normal now. I intend to have this out with my Consultant if I do get to see him in May, which will be 8 months since I saw him last (and first). the bloods I was having done in the Summer were all "no indication of raised inflammatory markers", even though my hands looked liked footballs and all my joints were hot and swollen, knees, ankles, feet, etc.?? Interesting it certainly is

  • yep julie, a typica thing me thinks do rhematologists ever use their eyes///.., mine usually peers of the top her glasses at me but never does a physical examination

  • I was diagnosed through a blood test 3 years ago initially with palindromic arthritis, positive Rheumatoid factor. Here is the strange thing I had been tested 10 years previously for RA and was negative, so something triggered it, and that thing was a very stressful year! Well thats neither here nor there, how does it affect your treatment if you are not positive do you not get anti tnf?

  • Hi Gina

    Yes you can still get anti-tnf whether negative or positive. Some treatments are more effective on some patients than others as each works in a slightly different way. I'm on my second anti-tnf; Infliximab failed after 12 months but I have been on Enbrel for 7 years and that has worked well. Lots of new meds in the pipeline :)

    Lyn x

  • I too am sero negative. I was tested for Rheumatiod factor over 4-5 years ago when I first started to suffer. It was onky 18 months ago when I swelled everywere that they did ESR and CRP testing and confirmed Sero - Neg.

    I am not sure if they did the Anti CCP-tests and I will be checking with my rheumy on my next visit.

    Julie I cant belive you are not told, I have a little book off all my previous blood results in it too see for me if I can find a patern that triggers it, but also for rheumy and doctors to glance at on each visit.

  • im the same i dont get told anything about my RA, even when i ask doctor or consultant (when i get to see him) once every 8 months i ask about certain things and they just look at me and say every thing fine, its not fine i want to know whats fine why is it fine , and if its fine why am i still in pain sylvia

  • Hi Sylvia

    There's a common misconception here. Blood work may well show that levels of inflammation are down however that doesn't necessarily mean you won't have any pain. Pain can be caused by all sorts of things and not just inflammation. Perhaps a heavy afternoon of cooking, weeding the garden, walking a little further than usual.

    You perhaps need to request your GP to review your pain relief. The best way to take pain relief is not to wait until you feel pain but to take it regularly so that it builds up in the system and actively controls the pain.

    Good luck

    Lyn x

  • hi ya, has anyone heard of celabolin ,cream or tablet i got a leaflet in one of my magazines and am thinking of trying it, im fed up of taking methotrexe and was going to ask doc if i could lower dose as i take 6 on mon sometime i feel im just a study for to see how methotrexe works after years of taking, has anyone every come of it and been able to live a full live again sylvia

  • Hi Sylvia

    I came off methotrexate 10 months ago (due to neutropenia/lack of neutrophils). Since then RA has been uncontrolled for various reasons. Methotrexate works on the disease process which helps prevent joint damage. Anyone with RA should, at very least, be on a Disease Modifying (DMARD) drug.

    Creams and potions at best will deal only with the symptoms of RA and will not help tackle the disease itself. They may help with pain but to my knowledge Celabolin has not undergone scientific trials. You have to be careful this type of stuff doesn't react with prescribed meds.

    Lyn x

  • thanks lyn, im ive apointment with my doctor next week will talk it over with her sylvia x

  • How interesting Lyn. I am sero-positive - or at least I was 2 and a hlaf years ago when I was first tested - my GP described it as mildy positive but I was pregnant at the time so maybe the level was lower because of the so-called pregnancy remission (a fallacy in my case as that's when my symptoms first presented themselves!).

    I wonder what it would be if I was re-tested now....?

  • I think once you've tested positive for anti-ccp or rheumatoid factor you stay positive! The levels may change depending on how well the disease is controlled. So presumably as it was mild at the time it could be quite a bit higher now!

    Lyn x

  • Hi Lyn

    We touched on this a few weeks ago as I have Humira, and weekly for the last 16 weeks, my crp was then 148, i used to get a copy of my bloods everytime I had an appt with rheumy nurse, I have to ask now. We will probably have to provide the paper and ink now with the latest cuts. I'm sero-negative first diagnosis was inflamitory arthritis due to throat infection, how wrong was that.Six months later when I could just about crawl, I was told it was sero-negative with fibromyalgia to boot.

    i wonder what percentage of anti TNF drug is used for Sero-Neg against those with the RA factor, as you are on Embrel if I remember rightly, I'm on Humira, but that is not doing the job and my DAS score has gone back up from 1st score 5.1 Summer 2009 3.6 July 2010 January 2011 5.6 something is very wrong.

    I am seeing consultant this week prior to having this Ulnar nerve sorted out.

    As I have not had any humira for the last 3 weeks you will all understand how I feel.

  • Hi Tricia

    No Humira for 3 weeks, heck, I know exactly what that's like! Make sure you restart as soon as poss before it all leaves your system for good! Re-starting after 4 weeks off is almost like starting over ... I was off Enbrel for 7 weeks I was given wrong information by orthopaedics. Not a good place to visit.

    When are you expecting the op?

    Lyn x

  • I was diagnosed in 2006 - after being told my exhaustion was ME !

    I guess I'm positive as that's how they explained my diagnosis. 'You have a very high Rheumatoid Factor so you have RA'

    Tried mxt but it made my gums bleed - heavily. Been on Sulphasalazine ever since.

    I see my Rheumatologist every 6 months. She asks me to tell her my pain 'number' on a scale of 1-10, feels my hands, which are often painful but never swell, tells me they're fine, my bloods are 'fine' and gives me a new prescripton.

    Last visit she said I was in remission as I never have swelling with my flare ups !

    This hasn't stopped me being unable to move my right shoulder for nearly 2 weeks and constant pain in my feet, knees and hands. Where do they get this remission idea from !!!

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