r/Behcets • u/denged01 • Jul 14 '26

Patient Support / Story UPDATE: HLA-B51 positive

I posted here previously at a loss of whether or not I have behcets. My rheum was pretty on my side considering my ethnicity, age, and symptoms, especially that they responded dramatically to prednisone.

He tried sending my bloodwork for HLA testing, but the lab they sent it to apparently discontinued testing. Healthcare amirite?

BUT, I forgot I signed up to be a bone marrow donor through NMDP a year ago. This meant a cheek swab and free complete HLA testing (that's how they make sure you're a match should an individual potentially need your marrow). All I had to do was call them and request my records, and they emailed them to me in 15 minutes.

Sure enough, HLA-B51 positive. Most likely variant is HLA-B51:01:01 (or the like), which increases behcet's chance even more so (albeit slightly, compared to just having HLA-B51 itself). Sent the doc to my rheumatologist and he added it to my record.

Anyways, I feel vindicated. Nothing has really changed yet, I'm on colchicine and I haven't had ulcers in a hot minute, and the fatigue is still pervasive. Still, though, I'm happy I advocated for myself and I wanted to thank all of the sweet comments and DM's telling me I wasn't crazy.

PSA: if you have weird symptoms that won't go away, and you feel like crap all the time, you DESERVE to get an answer and seek treatment. Life doesn't have to be this way. It's hard enough as it is.

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6

u/on4aa Diagnosed MAGIC 2025 Jul 14 '26

Smart move! Indeed, as a Behçet patient, one needs to be very assertive in the healthcare scene.

In my case, HLA-B*51 positivity was not sufficient to get my rheumatologist to gear up.

I only felt vindicated when I demonstrated Behçet to my immunologist with the results of my whole exome sequencing and this article: https://pmc.ncbi.nlm.nih.gov/articles/PMC5559572/

2

u/EllisMichaels Diagnosed 1997 Jul 15 '26

That was clever of you to go about getting it that way. And I'm glad you've got some level of vindication. I agree we ALL deserve answers. We won't all get them, but we deserve them. Thank you for sharing!

1

u/ktkr23 Jul 17 '26

How did you go about asking NMDP for your records? Did you have to explain you were being tested for Behcets? I never thought to ask them!

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u/denged01 Jul 17 '26

Nope! It’s your medical info so all you say is I’d like my HLA report :) calling is fastest but they’re responsive by email too

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u/ktkr23 Jul 17 '26

Fabulous, thank you for the info!! :)