Genetic marker

[Amandajane64]

Do you have to have the hla genetic marker to be diagnosed with behcets ?After testing i am negative for the gene but still getting symptoms, my rheumatologist seemed to dismiss that i may have behcets after negative test so im a bit confused.🤪

[Miataman]

I'm kinda in the same boat. Curious to see what they do for you.

[Amandajane64 in reply to Miataman]

Ive got appt with gp on 18th, going to ask if he will refer me to the centre of excellence in birmingham. Havent had appt with rheumy since sept 2022.

[Ayea]

No -- definitely not. People with Behcets are not always positive for HLA-B51 and people with the genetic marker will not necessarily get Behcets -- its just an association. I am negative and that was not a problem for my Rheumy who still diagnosed me with Behcets. In fact I think he said it's quite common for this marker to be negative when Behcets is found in Northern Europeans.

[Amandajane64 in reply to Ayea]

Thank you for your reply, ive recently been getting more symptoms so will go to my gp and see if i can get reffered.😊

[Flora_Fauna]

Hi I agree with Ayea. There's more ppl without the marker genes in alot of Autoimmune conditions, than there are with. I haven't the marker gene & I have Behçets.Now under another Rhumatoligist being tested for additional Autoimmune Lupus?,Sjogren's? or Psoriatic Arthritis? I have no maker for Lupus either, but many, many symptoms.I have had to undergo MRI, Ultrasound scans, extensive blood tests as another way of my Rhumatoligist getting any answers. Sometimes with Behçets you dont have a Positive Pathergy skin prick test either. I didnt, however on a different day I got/get terrible reactions to needles! depending on how flared my body is at the time.

Unfortunately Ive had to be assertive with past Rhumatoligists, GP's as they rule things out by typical text book symptoms/markers

Gather enough info & evidence yourself inclu photos of your symptoms/flares & present them next visit. Unfortunately in regards to Behçets we sometimes have to Educate 'Professionals' especially GP's as many haven't dealt, come across, trained in it before. (If more awareness about Behçets across the medical field was planted , i think they'd find that Behçets although still 'Rare' wouldn't be so, they would definitely find many more flowers growing & know how to look after them!). Goodluck 🍀 & don't give up , get the referral to one of the Centers of Excellence where you'll be listened to , understood & hopefully treatment that helps 🌸

[Amandajane64 in reply to Flora_Fauna]

Thank you for your reply. I also have Rheumatoid arthritis so medical people always attribute new symptoms to that so it is a battle to get them to consider anything else. Theres one gp at our surgery that dismisses anything you say before you even finished the sentence🙄. Ive booked appt for the 18th with a gp who is more understanding and on the ball so hopefully get answers.😊

[Flora_Fauna]

I feel you 🌷 I get the opposite now, everything gets put down to my Behçets! (Can't win hey) keep fighting, you know you keep taking those ulcer, skin, eye photos. good luck on 18th 🍀

[Amandajane64 in reply to Flora_Fauna]

Thank u.😊