Ankylosing spondylitis/ spondyloarthritis HLA b27 negative?

[pigletinthewoods]

Hi

I’m a bit worried as my GP is currently testing me for the above conditions.

I had juvenile arthritis as a teenager and have had all the symptoms of AS for months now, apart from eye inflammation.

However, afaik my HLA b27 test came back negative. Don’t know for sure as it was only receptionist who told me over the phone that the blood results said NFA - I’m not sure all of them came back yet as the GP ordered some other tests too.

So, my question is, is it possible to have AS without the gene or would it be something else?

@pigletinthewoods
I have AS but negative HLA b27. Get referred to rheumatology as soon as, it can take a long time.

Any questions feel free to ask.

Oh wow, thank you for this! It’s all new to me, good to know that I shouldn’t be ruling out AS just yet!

I’m currently waiting for x ray results, won’t know anything more for about 10 days.

May I ask if x ray was enough for you to be diagnosed? I’ve had symptoms for months but not years and been told that x ray only shows advanced changes. 🙏

Well, I might have had symptoms for years but not to the point where I had to seek medical help, until a few months ago it was manageable and put down to lifestyle etc

You're welcome.
Xray didn't show it, it was only when I had an MRI. That was years ago though.
What other symptoms do you have, where's your main pain?

My RA was just described as "undifferentiated inflammatory arthritis" for years before I was given the RA diagnosis. At various points I've been told it was likely AS or psoriatic arthritis. Now it's RA. I'm seronegative and my GP at the time tried to fob me off for that reason but I insisted on a rheumatology referral and my specialist says it's not that unusual to have negative blood tests. There's no single test for any of these conditions.

Thank you again! I’m also thinking MRI might be necessary if x ray shows nothing, can’t live with this pain undiagnosed forever, it’s debilitating.

Im sorry you’re probably in a lot of pain 😢

The most persistent pain is in my lower back, buttocks, hips and radiating to my knees. I wake up every morning stiff and in pain, to the point that I have to get out of bed flat, in a very awkward position. I also wake up multiple times during the night and early in the morning. Can’t get comfortable, sleeping on one side with a pillow between my legs helps slightly (let’s say I wake up 3 times instead of 6).

Walking and light jogging makes it better but standing or sitting does not.

Also general malaise and transient pain in my other joints like fingers, arms and shoulder. Often feel like I have a fever in the evening. I remember these symptoms from when I had juvenile arthritis but instead of back/hips, the worst pain was in my knees back then. It was literally decades ago though so don’t remember much.

Thank you. This is useful because I wouldn’t know to insist on a referral. I’ll wait for the results and make another appointment with the GP, see what they say. 🙏

I had the RA factor tested and apparently it’s negative too but they didn’t test the red blood cell sedimentation rate which is what was abnormal when I had juvenile arthritis.

@pigletinthewoods Please push for a referral. It does sound likely. You know the signs from childhood.

I suffer with a lot of pain. Not as much as pre medication days but I'm in the process of changing my biologics too. I take naproxen or co-codomol as well.

Fevers are a thing for me too, more so before I was treated.

Keep us updated.

I really struggle with standing too.

Do you get eye pain? (I know you said not inflammation).

Yes, standing seems to be the worst. Always feel guilty pacing back and forth for probably annoying everyone else in the queue ;)

Not really, I have sensitive eyes but it’s probably because I work with computer screen non stop. It’s not pain though, more like sensitivity and blurred vision sometimes.

Do you?

Hi. Me too. MRI confirmed and supplemented the X-ray findings. I was dreadfully delayed in being diagnosed which was due to the GP. Landing in rheumatology was through a chance conversation and I was then relatively fast tracked because it was quite bad. My hospital team are amazing. I have a fortnightly biologic but required two hip replacements because the inflammatory damage prior to medication was so advanced. Five months after the second op and firmly in a medication routine it is largely under control with reasonable adjustments like making sure I move around enough. There are things about my anatomy and physiology that I now understand in the AS context. It's an ongoing learning experience.

Thank you! Sorry you had to suffer so much before it got diagnosed!

Seems I need to brace myself for difficult conversations with my GP 😬

@pigletinthewoods yes I get eye pain. And blurred vision but that's only since being on the biologics which I'm having to take extra tablets for. I'm hoping after I switch biologics I can come off the tablets.