I have lupus and aps and now being checked for this as I have SI joint pain and previously had sacroilitis on X-ray with narrowing and sclerosis of SI joint. I get really bad pain in my sI joints and wake in the night and morning stuck on my side unable to move as my lower back has ceased up.
I’m sure I’ve had the hla b27 year before but rheum can’t find it so gonna repeat. I’m sure i had it and it was negative. Can it be negative and stillhave AS??
He’s sending me for an mri scan to see what happening.
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Sara_A
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Hi, yes you can have ankylosing spondylitis and be negative for hla b27 although about 95% of people with AS are positive. There's a lot of diagnostic criteria for AS and the gene is just one small part. If you have inflammation in and around the SI joint, pain that wakes you in 2nd half if night and stiffness that eased off through the day these will all point to AS. I am hla b27 positive MRI showed masses of inflammation through SI joints and described above symptoms - was diagnosed with AS in October. Have you been prescribed an anti-inflammatory? Naproxen means I can get out of bed in the morning - previously I could only roll myself out. I would also recommend some exercise - I favour yoga and Pilates but swimming and walking are also good. It does make a huge difference if you have AS.
I wake in the night from being asleep on my side to not being able to roll onto my back I either have to wake my partner to move me or grab the headboard and grit my teeth and pull myself over. The bottom of my back just totally ceases up and I cannot move. It definately is worse in the morning and improves throughout the day
Sounds similar to me. I had lived with fatigue and general constant flu like symptoms for over 25 years before getting the AS diagnosis. Hence being on lupus forum as my symptoms fitted. My rheum tells me the AS will have been causing these probs all along. It seems symptoms can be different in women to men, although I have chatted with a bloke who has it whose symptoms were identical to mine. I get pain mainly when I have stand for more than about 3 mins in my SI joint area and pain in my left hip on waking with stiffness but minimal pain through SI. Heat pads are a good send at times for me!
I have AS. I'm HLA-B27 positive. I believe more than 90% of people with diagnosed AS are HLA-B27 positive, so this suggests you can be HLA negative and have AS though it is less likely. Mine was diagnosed by the marker being positive. Inflammation of the SI joint on an MRI and lots of unpleasant uveitis. I hope this helps.
Was up at 7am this morning with the kids and by 12 o’clock lunchtime I was sooo tired I seriously struggled to stay awake! Typically I couldn’t get my almost 2 yr old to have a sleep so I could shut my eyes it was a real struggle to stay awake. It’s the most awful feeling being so fatigued but unable to go to sleep.
I just feel sooo exhausted but then it could be the pain that’s making it worse at the mo, I did have to take some diazepam last night to relax my back it was so tensed up from pain so that may have made things worse today.
I just wish they could do something about the fatigue, it’s lucky I have my kids or I’d probably never get out of bed!
Ah yes, the years of repeated blood tests that always came back fine... My inflammatory bloods were never anything other than normal, yet my MRI showed masses of inflammation through the SI joints. When will they learn bloods do not show everything?! The worst thing is being told there is nothing wrong with you so many times you start to genuinely believe you must be going mad. I've mentioned on the NASS forum on their website about the possibility of starting a forum on HU.
Yes that’s how I feel deflated! I know it sounds stupid, like I’m wanting something to be wrong but it’s not it’s more I want to know why I have so much pain feel like am going mad now x
Yes, my sister is in the same position: she has a lot of similar symptoms to me but she is negative for the gene. However, she finally got a referral to a rheumy after my AS diagnosis and she had an MRI last week, now awaiting results. As I have AS drs are now taking her symptoms more seriously.
When I was told I had AS I said to my rheumy that I didn't really know how to react: on the one hand, vindication - I told you there was something wrong, I even told you it was my body attacking itself and I was right! On the other hand, AS isn't a great diagnosis is it?!
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