Axial Spondyloarthritis?

[Diamondpainting]

Hi Guys and Gals. Just wondering if anyone on here has been diagnosd with Axial Spondyloarthritis. From 2009 - 2013 I had major spine surgery, in 2013 (my last surgery) I developed septicaemia which triggered my RD. 7 years on my back gives me unbelievable pain still and my consultant has said that it is probably arthritis, he can't find anything mechanical wrong and has now discharged me. Until now my spine and the RD have been treated as seperate conditions, however, I recently googled arthritis in the spine and this Axspart popped up showing all the symptoms that I am experiencing. I mentioned it to my nurse practitioner, but she doesn't know anything about this condition (only heard of it). How has anyone been diagnosed - x-rays or ultra sound, or a blood test result? I am sero negative. Any advice would be greatfully recieved!

[helixhelix]

People probably know it more as Ankylosing Spondylitis. If you put that in the search box top right you’ll get up previous posts. There are quite a few members with it on here.

[Diamondpainting in reply to helixhelix]

Thank you

[Hidden]

Yes I have ankylosing spondylitis. To be diagnosed you need to show changes on x-ray or inflammation or changes on MRI in the SI joints (it MUST show here), rheumatologist sorts this. You can ask your GP to check for hla b27 gene - it's not a deciding factor as you can be positive and not develop AS - but in my experience if you are positive your path to diagnosis is smoother. It's a blood test GP can order. Google NASS - they have lots of info on their site. I usually have to educate GP surgery staff when I see them, apparently on average a GP will come across a patient with AS once in their entire career and many never will.

[Diamondpainting in reply to Hidden]

Thank you

[Marionfromhappydays]

I was diagnosed with inflammatory arthritis this year, I get back pain (around SI joint, rib level and neck) I am also affected in alot of other joints in body .

I think its stated that RA doesn't included back pain but I can categorically say mine is due to arthritis and sometimes I think certain inflammatory conditions can overlap. My consultant didn't question the back pain as not being due to arthritis (I think thats why I had a broad diagnosis of inflammatory arthritis).

I do know that methotrexate helped alot with all my joints.

I am seronegative and im having physio and the physiotherapist said my symptoms are classic seronegative arthritic ones.

Take care x

[Diamondpainting in reply to Marionfromhappydays]

Thank you

[Brychni in reply to Marionfromhappydays]

apparently AS is autoimmune inflammatory and also causes problems with distal joints as well as the back and neck. So MTX, hydroxyc. etc can help with that but don't do anything for the spine - which may be why my back symptoms have got worse since diagnosis. Although I did labour the point then.

[Wobbies]

Yes I have been diagnosed with axial spondyloarthritis. Had back and leg pain for years which was dismissed. Now have pain in other joints. It does not show up on MRI or CT scan and the only indicator in my bloods is raised inflammation levels. My rheumatologist said that it does not always show up in scans but my description of the pain and his physical examination led him to the diagnosis. Started on biologics and all the symptoms disappeared but unfortunately it failed after 3 months. Now waiting to start on methotrexate with fingers crossed. Just to warn you, I had to find a consultant that I trusted myself to get anyone to listen to me, as doctors did not want to know, and was even told I was making it up by one! Consultant says the fact that the biologic worked so well initially confirmed his diagnosis. It is difficult to keep going though.

[Diamondpainting in reply to Wobbies]

Thank you Wobbies. I am hoping that my back pain is taken seriously as it is definitely getting worse along with pain in my legs. MRI has shown n nerve problems so this feels like a last diagnosis resort. Hope the MTX works for you!

[Tompark]

Yes I have Anklosing spondylitis and Hla b27 gene. There are some very specific changes seen on mri spine scan that they look out for and can diagnose from that.

I am now on sulfasalazine 1g three times a day which has made it completely resolve. Methotrexate is also used but I don’t have experience of that.

I hope you get proper diagnosis soon so you can get treatment

[Diamondpainting in reply to Tompark]

Thank you

[Brychni]

Hi - I have similar symptoms to Marionfromhappydays - in fact my upper back has been truly awful for a few days now and I have an appointment with a chiropractor tomorrow. Like Marion I feel it is part of my condition which was diagnosed on Doppler ultrasound on my wrists 9total surprise BTW and still in some denial) mainly because everything else is flaring up too and becoming ever more 'classic' RD every time it happens. Good luck. I am hoping that mtx will sort it out although I've only been on it for a few weeks so it will be a while.

[Diamondpainting in reply to Brychni]

Thank you for your reply Brychni. I am hoping that I may get some ultra sound tests done on my joints (especially my spine) to see what is happening. Good luck with the MTX!

[allanah]

There are lots of ankylosing spondylitis help groups online and a facebook group which my friend is in and is quite community active.

[Diamondpainting in reply to allanah]

Thank you

[allanah in reply to Diamondpainting]

😁😁