Ankylosing Spondylitis

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pianoforte
pianoforte Member Posts: 25
in Living with arthritis

Hi all, after a long process of tests, during 3 years, I've finally been diagnosed with AS. Initially, I was diagnosed with PMR then Seronegative arthritis and now AS as well. It has been a real battle to get a diagnostic. I'm suffering from the hips and lower back, shoulders and knees. Also feeling some pain in ankles and wrists but rather mild for now. I was an active person but now the whole world has shrunk. I'm also worried about my 2 lovely children as I understand it's in the genes

I have read in posts that some people with AS has done a specific test: HLA. Is this something the NHS does systematically or should we ask for it or rather do it privately? And can my children do it even if they're in there 20's? Thank you.

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  • Emmasknackeredjoints
    Emmasknackeredjoints Member Posts: 125
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    @pianoforte hi , 3 yrs feels so long to get a diagnosis. How did they reach the diagnosis in the end if you don't mind me asking.

    Hopefully you have started some treatment .


    The HLAB27 blood test is done on the NHS I'm surprised you haven't had it. The blood test for me was £120 in the private sector as my rheumatologist was useless.

    The test on its own doesn't prove you have any disease at all. It only proves you carry the gene and you may never go on to develop AS , There has to be symptoms

  • pianoforte
    pianoforte Member Posts: 25
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    Hi Emma, yes indeed 3 years has been a long time. However, the condition developed gradually although I had medication: steroid, sulfasaline, methotrexate, amgevita. Finally, my rheumathologist accepted to prescribe an MRI as I was in agony, but she thought it would only be mechanical at first, but then rung me to give this diagnostic. I've on a different bio treatment now: secukinumab. Hopefully it will have a better effect.

    The test HLAB27 wasn't offered to me. I'm not sure why but I shall ask.

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