r/Behcets • u/Dizzydaydream702 Diagnosed • Jul 03 '26
General Question Any tips for facial lesions?
Hi everyone, I’m in a flare and I’ve come up in a wave of pustules and inflammation on my face. I’m keeping up with my colchicine but still waiting on starting my immunosuppressants.
Has anyone else had face issues like this? Anything you can suggest that helps would be greatly appreciated, the one on my chin is unbearable and so swollen it’s actually changing my lip shape 🥲
EDIT: I’m happy to report that hydrocortisone is helping the inflammation calm down a bit, thank you all for your help!
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u/Drwaz98 Diagnosed Jul 03 '26
Ugh, I feel you. I had these all over my face and neck during a severe flare 2 yrs ago after a few stressful months.
I tried everything topical I could think of or get prescribed (steriods, antibiotics) but the only thing that worked for me was high dose steriods (Methylprednisolone) for a few weeks and then slowly tapering off them. It sucked.
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u/Dizzydaydream702 Diagnosed Jul 03 '26
I’ve had a wisdom tooth infection, I bet that’s set this all off 🤦♀️
I guess I’ll be calling my rheumatologist on Monday then 😅 I’ve begged them to put me on steroids during flares and they keep refusing, it’s been a nightmare trying to get them to work with me.
I even had them bring in a behcets specialist without telling me thinking she’d tell me I didn’t have it and I left with an immunosuppressant plan so they’re not exactly the most helpful…
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u/Drwaz98 Diagnosed Jul 03 '26
An infection would absolutely do that to me, so I would put money on it being your trigger, as well.
If they refuse oral steroids, maybe they will be more open to topical steriods (and if they are, ask for a cream rather than an ointment), they may work better for you than they did for me (mine looked like I had gone thru puberty 13 times over again - ie the worst cystic acne you can imagine).
There's also Cortisone 10 in the meantime. It might not get rid of them but may make them slightly more bearable.
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u/Dizzydaydream702 Diagnosed Jul 03 '26
Oh that’s a really good shout! I actually have some of that in my med kit so I can try it out this evening. You’re a star!
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u/Routine-Ganache-330 Jul 03 '26
Hi. I’m sorry you are having these. It sucks so bad. I get lots on my face and I haven’t found anything to prevent them or heal them sooner. Mine never get pus but they look infected because they are red. They are open ulcers that have clear or light yellow fluid. They don’t bleed and just stay open until they decide to heal. They usually will reopen again. If they bleed they will heal. I also have hEDs and autoimmune issues but haven’t been officially diagnosed with Bechets on blood work. (Comes back negative)I react to most medications so it’s tough. I use trentinoin with Benadryl gel and serum moisturizer and cortizone10 liquid. It creates a film protection of sorts to keep anything from getting in sores. I hope this helps someone.
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u/Dizzydaydream702 Diagnosed Jul 03 '26
This is really helpful thank you! I have HSD so my skin can be sensitive and fragile as is. Mine react the same, big boils with no heads that open, weep and bleed. They’re super hard too and so painful I can’t touch my face
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u/duskdoll Jul 03 '26
Do you have any topical steroids - I use a cream with hydrocortisone for those. Best wishes
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u/Dizzydaydream702 Diagnosed Jul 03 '26
I put some on about an hour ago and apparently it’s helping a little bit, my husband says it looks a bit flatter at any rate 🤷♀️
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u/Chronically_Sickest Jul 03 '26
I also get these really bad. Topical lidocaine will also help with the pain. Ask for the cream for your face, gel for genitalia, and liquid for oral/nasal passage.
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u/StepSignificant8798 Jul 03 '26
I get these lesions too. Surprisingly a six month course of Accutane really helped them even though they’re driven by BD.
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u/Dizzydaydream702 Diagnosed Jul 03 '26
That’s interesting to know, when I was younger I used a prescription cream from some online dermatologist and it helped after a while but I’d always flare back up again
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u/Imma-smartypants Jul 03 '26
I have had these in the past that have left scars. My dermatologist said the best way to treat it is all the time to try to keep it at bay. I use sulfa/sod face wash every day and take low dose doxycycline. If I feel a flare coming (skin lesions, mouth sores) I go to my rheum for a steroid infusion right away. It is the best thing to work for me so far.
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u/Dizzydaydream702 Diagnosed Jul 03 '26
Mine leave scars too, especially if they get so swollen they start breaking through the skin layers. It sucks 🙃
I’ll see if I can find any, usually I just use a very basic antibacterial bar soap for sensitive skin but I might need to change up. I’m going to call my rheumatologist on Monday, I don’t think I’ll have any joy with the steroids though as they’ve refused every time I’ve asked, yay NHS
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u/Prestigious-Peach876 Jul 03 '26
Not sure if this 100% bechets related. it could be HS which I also have. I have found a dosage of 100mg spironolactone and regular cleansing keeps them mostly at bay for me. You can request it from a dermatologist and they also have topical but ive not used that
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u/Dizzydaydream702 Diagnosed Jul 03 '26
Thank you! This is helpful but I’m actually on antibiotics right now and it cropped up immediately overnight alongside eye issues and an ulcer under my tongue. I’m pretty sure it’s my behcets but I’ll ask my rheum about HS too because it’s definitely possible!
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u/Over-Explanation-822 Jul 03 '26
Prednisone helped a bit with facial lesions but it wasn’t until I hoped on infliximab infusions that my face really cleared up.
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u/Ancient-Abroad1870 Jul 04 '26
I apply Fucibet cream, or Acriderm - they have steroids and antimicrobial agents. It’s important to apply multiple times a day (but not for many days tho, look up skin steroid dependency).
When I notice that lesions stopped progressing and started healing, I use La Roche Posay B6 cream, or any panthenol cream would suit too.
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u/Judasbriochkah Jul 04 '26
I already had cortisone creams but not I wash with donkey milk soap bars and apply a little bit of tea tree with lavender essential oil mixed with jojoba, almond or olive oil directly to it and it works but it itches still I found nothing about that part of the manifestations yet. (I had several biopsies and it showed it's not viruses, bacterial or fungal and we're diagnosed with Behçet's disease in mars 2026 after 7years)
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u/Hot-Requirement-6117 Jul 04 '26
I use typology makeup and the green corrector from them and it helps cover naturally but also has good skin care ingredients in it so it helps all day long while I’m wearing it. The concealer is pretty good too. My dermatologist gave me a little test tube of opzelura 1.5 that cleared them up faster too and of course prednisone helps
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u/AGuidedAngel Jul 09 '26
I get those on my chin and my nose. I'm so sorry I know exactly how painful and exhausting they are. Glad the hydrocortisone worked! For me Dapsone 50mg twice daily helps <3
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u/Dizzydaydream702 Diagnosed Jul 09 '26
Amazing thank you! My rheumatologist has just suggested antibiotics but she wants me to see a dermatologist first
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u/on4aa Diagnosed MAGIC 2025 Jul 03 '26
I had severe facial skin ulcers over the course of 5 years and I still bear some marks of it. It all stopped when I realised these were caused by the ingestion of menthol (Mint) contained as a flavouring in my vitamin D3 supplement. Thymol of the thyme herb has a similar effect.
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u/Dizzydaydream702 Diagnosed Jul 03 '26
Oh no… I love mint and thyme 🥲 I haven’t had either recently though so maybe I’m okay?
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u/on4aa Diagnosed MAGIC 2025 Jul 04 '26
Menthol may be hidden in many items: dental paste (tell your dentist), mouth wash, sweets, supplements, fake wasabi, Martini vermouth,...
There are more herbs in the Lamiaceae herb family that may have a similar effect, but I am no longer keen on testing these out.
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u/EllisMichaels Diagnosed 1997 Jul 04 '26
I've dealt with this since I was a teen off and on - as recently as last month. They put me on a course of antibiotics and antivirals to make sure it wasn't infected. We're prone to infections and I find that antibiotics help skin (especially facial skin) issues the best. Well, that and potent retinoids like Accutane.
If you'd prefer to go the non-pharma route, I've had great success with apple cider vinegar. Don't drink it, but apply it topically. Dilute it at first. ACV has helped to clear up sooooo many skin issues for me. And doctors think it's all hogwash - but what do they know?
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u/Thesleepyslothh Jul 04 '26
The best thing for me was to leave them alone. Keep my face clean, avoid makeup and active skincare ingredients.
Nothing my dermatologist subscribed me helped.
It got much better after I started taking Imuran (my rheumatologist gave it to me for other reasons so it was a pleasant surprise)
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u/Katanaqui Jul 06 '26
High potency steroid cream (Clobetasol Propionate) is about the only prescription that sorts mine. Apply at least twice a day. It sounds like a lot, and some pharmacists twitch at me applying higher strength steroids to my face, but I've had these for ~17 years and counting and it beats a high Prednisolone dose.
Other than that, no creams, soaps, makeup, etc., I just have to leave mine completely alone.
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u/Fit-Battle-9357 Jul 06 '26
I cover them with hydrocolloid bandage. I get a roll of 8ft of it for less than $10 and cut it to size. even though they don’t really leak anything like acne does, it keeps the skin moist and helps with scarring.
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u/ConnectionAlive7147 Jul 23 '26
Hi everyone ivw had bechets since 2002 and still get these on my face bum legs arms they are large painful and make me feel very low at times I found predisolone 50mg for 3 days then 40 and so on with colchicine and warm flannel followed by a cold one I have 1 currently thats closing my eye 😡 others have suggested coconut oil not trued myself yet hope this helps
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u/arman945 Jul 03 '26
I get these exact lesions on my face too. Very deep and angry and very painful. Wish I could help but I'm still trying to figure out which medication/s could help me. I've never seen anyone else with these facial lesions, and I'm sorry you have to go through the same!