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Anyone out there with Behçet's and vasculitis?
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.
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Good to know! I will explore this. Sounds familiar. Please post updates.
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2 Reactions@larak, I know that @richardrr is looking to connect with others diagnosed with Behcet's.
- Behcet's disease: Would like to connect with others https://connect.mayoclinic.org/discussion/behects-disease/
Using search I also found discussions related to vasculitis and to ascending aortic aneurysm to help you connect with others
- vasculitis discussions: https://connect.mayoclinic.org/search/discussions/?search=vasculitis%20
- aortic aneurysm discussions https://connect.mayoclinic.org/search/discussions/?search=ascending%20aortic%20aneurysm%20
Fingers crossed for a good relationship and answers with the new rheumatologist.
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3 ReactionsThank you so much! I will look into these discussions.
I do not know whether the journey is over yet. I know the rheumatologist was quite up front about, "I don't prescribe these meds lightly because I don't want to shut down your immune system." And I get it.
But it is more than just the aneurysm. It is all the symptoms of Behcet's and not even knowing if anything else is affected by the vasculitis. They've been pretty dismissive thus far of the dilated main pulmonary artery measuring 3.4 cm. (Norm: 2.7 women, 2.9 men. I am a woman, AFAB.) And pulmonary artery aneurysm is usually the killer in Behcet's.
It's frustrating, for sure. But I am hopefully closer to some solutions.
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1 ReactionThank you very much.
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3 ReactionsI feel for you and know that having a rare disease puts you at a disadvantage and puts the onus on you to research, learn and fight for what you need. My father has Behcets and was diagnosed by a neurologist. His presentation was different than yours, but so many symptoms can occur, it’s good to be aware and prepared for them all. The PAH and aneurysm require cardiovascular specialists, frequent monitoring and aggressive treatment of the PAH. A teaching hospital or special clinic like Mayo, Cleveland Clinic and similar would be helpful. My dad had arthritis, DVTs, strokes (probably from cerebral vasculitis) and was treated with high dose steroids (100mg/d) when needed. A team of rheumatologists, neurologists, cardiologists and vascular specialists should be able to treat you appropriately but they must be willing to talk to each other and plan treatment as a team. ABDA is a foundation that provides support for Behcets patients. I would check that out. Good luck and stay well!
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4 ReactionsThe neurology aspect makes sense. Strokes are what took out my Poppa (paternal grandfather) at an early age.
Thank you for all the resources!
I have a cardiovascular surgeon following the aneurysm, but otherwise Brigham & Women's in Boston has been very hands off about the rest of it: chronotropic incompetence, PAH, the ANA, arthritis, dry eye, eczema/allergies.
The symptoms all started getting obnoxious back in 2019. It's been a long 5 or 6 years.
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1 ReactionLara, 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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4 ReactionsLara there’s a symposium on May 20 that’s accessible on the ABDA website for Behcets. It is free, you just register for it. It should be interesting. Let me know if you need help finding it. I think it’s at ABDA.org.
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1 ReactionThank you! This is great. I'll sign up and put it on my calendar. 🙂
I could use more, up-to-date info on treatments, in particular.
...perhaps you already found these links:
event on Monday 20 May, International Behçet’s Awareness Day
https://events.vasculitisfoundation.org/en/80L2FH6/g/ZyR3H2T2yD/5-things-to-know-about-behcets-disease-4a3wTV22nJ/overview
ABDA - American Behçet's Disease Association
https://www.behcets.com
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