1. < Autoimmune Diseases

Anyone out there with Behçet's and vasculitis?

Posted by Lara K @larak, Apr 27 6:35am

Firstly, if you're on the receiving end of a lot of medical gaslighting, keep searching. It took me 6 years to finally get to a rheumatologist who would run an HLA-B51 antigen test.

Secondly, anyone out there with Behçet's? What are your main symptoms and what is working for you for treatment?

I have a 5 cm ascending aortic aneurysm. It looks like I have pulmonary artery hypertension as well. That artery is nearly aneurysmal. Wicked dry eyes! They are the worst. I've been in a bad flare up for weeks now. I have a massive number of contact allergies now. Basically, soap is out to get me. My ANA titer is 1:1280, speckled. Arthralgia, mouth sores, nasal lesions...

And it still took me getting my genome sequenced and finding a way to scan the file for pathogenic variants to get to that HLA-B51 antigen test.

I have no guarantee that this new rheumatologist will even act on what he now knows. So if anyone with Behçet's has a decent doctor, I'd love that info, too.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Lara K | @larak | May 21 12:58pm
In reply to @slkanowitz "Lara, there’s a lot of overlap between autoimmune disease symptoms and lab results so it isn’t..." + (show)
@slkanowitz

Lara, there’s a lot of overlap between autoimmune disease symptoms and lab results so it isn’t always 100% clear especially at first what all the culprits are. Many of us have multiple AI conditions (I have 4). The dry eyes make me think of Sjögrens Syndrome. This is treated symptomatically, but provides some relief. It’s usually accompanied by dry mouth too. Your overall situation with arthritis, mouth and nose sores, etc should be treated with meds that suppress the immune system, not “shut it off”! The biggest concern IMO is the PAH, aneurysm, and vasculitis. I’m sure that’s your biggest concerns as well. I would make sure you have been checked for antiphospholipid syndrome, as that’s related to lupus and other AI disorders and predisposes one to blood clots, a hazard in Behcets. It requires blood thinners for prevention. I do hope you get good care from new rheumatologist and respond well so you feel better! Stay safe!

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I need to mention that antiphospholipid syndrome to my cardiovascular surgeon. I thought I'd been checked for that back when I first saw the cardiovascular surgeon. Turns out, I haven't. Thank you!

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