Sero negative

Has anyone been sero negative for any autoimmune disease? I saw rheumy today and from the last time when I saw him and his previous diagnosis of possible undifferentiated connective tissue disease he just kept saying that my latest blood tests had negative ana and negative other things. He did however agree to another stetoid injection and to put me back on hydroxy to see if it helps. He didn't mention sero negative like that's a possibility or even a thing. Is it really a thing, I mean a thing a rheumy would consider or is it a internet urban myth that the drs really don't take seriously.

Has anyone been sero negative and with treatment got positive bloods as I've read something before about someone not getting positive results until after they started treatment.

Thanks in advance

24 Replies

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  • When I saw Rheumy in March she thought at first I had fibromyalgia as my bloods always came back neg. But when I had ultra sound on my hands I was told I have sero neg RD and was prescribed sulfasalazine and then MTX (both had to stop with side effects). However when I saw the rheumy registra in July he just wrote to my GP that I had continuing inflammation and prescribed Hydroxy. Bloods still show neg for RD. I believe Sero neg is something rheumys consider but is harder to diagnose. Joolz.x

  • I was prescribed sulfasalazine it didn't agree with me, iv'e just had IV Lignocaine Infusion but too soon to see if it works

  • Hi I've been sero negative for 20 years it is a diagnosis from my Rheumi. Hoping the treatment helps xxx

  • I have had seronegative inflammatory arthritis since 2008 affecting my lower joints. I've had needle aspirations, blood tests and steroid injection. On sulfasalazine which has worked. My blood test are negative for rheumatoid arthritis but crp/esr was sky high. My rheumy classes it as a spondylarthropathy. My brother suffers uveitis which can be connected too.

  • I am seronegative and was diagnosed by a rheumatologist , they should look at the whole picture , not just one blood test x

  • I have had RD for 9 yrs now. Started on Methotrexate but that gave me tummy cramps. Then on Leflunomide which didn't make much change until I was put on Enbrel as well which has done wonders. I am now on Ebrel alone. At my last appt with the consultant he told me I was sero negative for the RD and this meant that any medication would work much better than if I was sero positive. I mean to ask him to explain more fully next visit.

  • I have psoriatic arthritis which meansI am aalways seronegative . My firdt appt I was told likely not ra but they drained fluid off knees which confirms ra .. when we made connection with psa I was told it nearly always shows sero

  • Sorry for spelling my fingers not playing x

  • I have psoriatic arthritis which meansI am aalways seronegative . My firdt appt I was told likely not ra but they drained fluid off knees which confirms ra .. when we made connection with psa I was told it nearly always shows sero

  • Hi,

    I have Crohns disease and it took two years to diagnose the seronegative Rd as consultant thought it was side effects of Crohns meds - all same meds are used for both - eventually, after suffering for a long time to the point of not being able to walk the seronegative was diagnosed which was a relief.- I now see Rhuemy and Crohns consultant - on Mtx, sulfasalazine and humira all of which help but will always have some damage - it is, indeed, real and I wish you good luck with it all.

  • Definately a thing, i was diagnosed 2 yes ago, seronegative RA by a rhemmy. I'm now on methotrexate injection, enbrel anti tnf and doing pretty well. Lots of diagnoses are descriptive, my first rhemy called it set negative inflammatory arthritis, my new consultant seroneg RA. Its all the same thing. Good luck with treatment, keep pushing till u feel better, that was the only way i got the treatment i needed

  • Mine is 'sero-negative inflammatory arthritis' on all paperwork from consultants and has been for the last 28 years. Treatment is usually the same but will depend on your own body's tolerance of the drugs prescribed. It may take some time to find the right drug to suit you as there is no magic formula to decide which one is best for you. Personally my body is very sensitive to DMARD's and does not tolerate them but that is not universal with sero-neg and everybody is different. If you do internet research try the arthritis research uk and nras sites for information on this disease and drugs available. Farm

  • Morning Charlie. I don't know if you've come across the NRAS website but there's a page explaining the differences between a seropositive & seronegative result. nras.org.uk/seropositive-se... It may help if you haven't seen it.

  • I was told my bloods were fine yet when rheumi discharged me he wrote in letter I was c-anca positive but at the time I was not showing signs of a vascular type disease. I am now crippled wuth oa in lumbar cervical and oa of wrist and fingers left dangling.

  • I am sero negative inflammatory arthritis and I am on hydroxy and if my liver levels are Ok (I have a dodgy liver too along with afib and SVT) will start on mtx and imuran. It is a 'real thing' as real as the pain and fatigue you suffer.

  • I was diagnosed with sero neg RD despite having a low positive rheumatoid factor and high inflammatory markers because of negative anti CCP. The 3 DMARDs I've tried over three years have each worked quite well but unfortunately made me very ill from side effects. Sero negative is very real. Some have aggressive disease with it and the thing that makes it worse than sero positive is that it's often diagnosed much later - by which time damage may have occurred.

  • Thank you everyone for all your replies. Im not sure I have any visible inflammation, fingers get fat but i think its more swelling than inflammation , I have lots of stiffness, cracking joints, feels like ripping of tendons, chronic pain and chronic fatigue. Feel like ive been run over and reversed on by a truck most days. I feel the weather change before I see it and have dry eyes, mouth, swollen glands etc. I also feel fluey most of the time but it will come and go so not proper flu. I did have a swollen knee for about 12yrs but even then my bloods showed up fine. When I read about connective tissue disease I did definitely did think he was on the right track but I got the impression the neg bloods means he is no longer sure. I think he thinks its Lupus as he is constantly trying to find a rash but apart from dry skin everywhere i dont have any skin issues nor do I have a problem with sunlight.

    Its frustrating because its take a long time and days of pain for me to decide I will go back on the hydroxy and I even apologised to him for not following his instructions and when i get there he seemed to not be so sure himself bringing back all my fears about being on meds with such harsh consequences and doubting if i need them.

  • Please don't worry too much about Hydroxy - it really isn't that strong or scary a medicine. You won't even need to have regular blood monitoring - just your eyes checked annually for very rare side effects.

    Re the Lupus. There are quite a few people on the Lupus UK HU community who are sero negative for lupus too. However, because Lupus Is much rarer many rheumies don't see much of it and look for more classic signs such as the butterfly rash. This actually only affects around 30% of Lupus sufferers though I believe.

    Lupus varies greatly from sufferer to sufferer so it is usually much harder to diagnose than RA and if you read up and really feel you do have it then it would be good to find a Lupus specialist rather than a general rheumatologist who may struggle to identify this disease. Unless everything is very obvious I.e butterfly rash, positive ANA, joint, lung or kidney involvement it can take many years to get diagnosis and treatment. Good luck!'

  • I and my two girls are sero neg. and we all have rheumatoid arthritis. Medication helps. I have been on biologics for 10 years and one daughter has been on sulfasalazine. It does not matter. It generally means that you won't have sever crippling; but that is not necessarily totally true for everyone who is sero negative. You will need x-rays to make sure and they keep x-raying you every few years.

    There are other ways to diagnose auto immune diseases and this one test is not a definitive. Charlie276, I have had connective tissue issues in my family also and you sound more like rheumatoid...it is hard to diagnose because many diseases are similar. They always look for lupus when they are not 100 percent sure. However, many of these diseases are treated with the same drugs. Please believe me when I say that medication can be life changing. You will still need rest and to stay healthy to help.

    Good luck to you and let us know what transpires.

  • I'm also sero negative - my bloods are all normal however it was the hand scan that confirmed the diagnosis of RD. It just took a long time to get there although I was receiving treatment - not that I feel it's really worked for me! I'll see what my rheumy says tomorrow when I see them!

  • Hi, I was diagnosed seronegative 27 years ago. Recently found out that I'm now seropositive!! Now got Rheumatoid Vasculitis too, which I was told I wouldn't have got if I was still seronegative! Thanks RD, the gift that keeps on giving.

  • I was sero negative in my 30s, & was sero positive in my 50s so it is possible. In my 30s was just checking due to family history. In early 50s was due to ongoing joint pain. So it is possible to change from neg to pos.

  • Hello charlie,

    I have seronegative RA/RD. I was diagnosed with inflammatry arthritis nearly 5 years ago after a negative blood result, but has since been referred to as Rheumatoid Arthritis in letters etc.

    Soon after being diagnosed I did lots of research on the net about RA to find out more, (as you do) and I discovered that the majority of sufferers are seronegative.

    It would seem that some people do have positive markers in their blood results but they go through life without actually having any of the autoimmune diseases, RA included.

    So, some Rheumatologists have taken these facts as a basis, but rely instead on examination of painful inflammed joints, ultra sound/X-rays and by asking you some questions. Unfortunately, not all doctors are of the same mind and prefer to give more credence to blood test results.

    Fortunately for me, my own rheumatologist did all the examinations etc, diagnosed and started my treatment on my very first visit to the clinic. I haven't heard that positive bloods are shown once treatment starts ? But you are being treated with steroid injections and Hydroxychloroquine, so your condition is being treated with the usual suitable drugs, so I wouldn't worry too much about the possitive/ negative aspect. Perhaps further clinical trials in time to come will make this subject more clear for the doctors and us.

    I wish you well and hope you are having a good day today. June x

  • Thanks again to everyone who has replied. I really appreciate all the advice, kind words and information. I really hope the hydroxy makes a difference so At least I know I'm on the right treatment. Nothing I've ever taken before has helped when things are bad from amytriplyn, tramsdol to prescribed strong cocodimal coupled with ibroprufen and a muscle relaxer.

    Thanks again and I'm so sorry that everyone has had to go through such bad pain in their lives. I really think it's crazy what ur body can do and How many people it seems to affect. It's easy to not give a second thought it be oblivious when it's not affecting you personally which I was guilty of prior to all this but reading everyone's experience it's so apparent how many people are struggling to just do daily things and it makes me really sad.

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