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HLA B27 positive

31 replies

Olive13 · 12/08/2025 00:09

We have just found out my 17 year old daughter has tested positive for the HLA B27 gene. She has been experiencing back pain for a while now, that has been getting worse and our GP ran various bloods. Does anyone know much about this gene and the conditions linked to it? We unfortunately were told via text message by the GP and she has been referred to Rheumatology but we are still waiting for her appointment to come through, so no opportunity to discuss with a professional as yet. I have had a look on the internet but ended up down a rabbit hole and genuinely terrified for her. I understand that a positive test doesn't necessarily mean that she will have any of the conditions associated, but my worry is that she is symptomatic, therefore it is more likely.

OP posts:
Ramblingaway · 23/10/2025 20:11

I'm sure rheumatology will do this, but make sure her eyes are checked. Iritis and uveitis are sometimes found in B27 positive patients but again if caught early can be very well managed. I'm the oddball patient that has the eye condition but not the gene. I must be positive for one of the autoimmune linked genes as I'm the 3rd generation in my family but when I started with eye inflammation there was only a test for B27.

HippyDays · 24/10/2025 06:58

Olive13 · 23/10/2025 19:28

We had a phone call today from the RUH, my daughter has an appointment with rheumatology on the 5th November 🫶

This is great news. It will feel forever, but hopefully having the certainty of a date will help.

Olive13 · 24/10/2025 19:28

Ramblingaway · 23/10/2025 20:11

I'm sure rheumatology will do this, but make sure her eyes are checked. Iritis and uveitis are sometimes found in B27 positive patients but again if caught early can be very well managed. I'm the oddball patient that has the eye condition but not the gene. I must be positive for one of the autoimmune linked genes as I'm the 3rd generation in my family but when I started with eye inflammation there was only a test for B27.

Thank you for this, I will make sure her eyes are checked. I hope your eye condition is well managed and you’re doing okay x

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blodynmelyn · 06/11/2025 21:16

Hope the appointment went well. I've just seen this thread. I am HLA-B27 positive and have axial spondyloarthritis. I was diagnosed fairly promptly so there is no damage. And I have very little pain left after less than 3 months on adalimumab. I am fit, active and work full time.

Olive13 · 07/11/2025 09:32

Hi @blodynmelyn this is really great to hear. I’m glad you have no damage and have responded well to treatment.
My daughter saw the the consultant, he is happy with the range of movement in her back. She had some bloods taken and he has requested an MRI of her back and a scan of her hands. We won’t know anything until this has all been done but I’m glad the she is in the system, hopefully it won’t take too long for the MRI x

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HippyDays · 07/11/2025 20:22

Great that she has been seen x

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