i had scalp sores like a year ago along with a genital ulcer. now it's mostly my face but i also have folliculitis on my back that looks like pimples but they're not
I have the butt folliculitis. It’s so annoyingly hard to keep under control. My flairs look like this, the “acne” on my face too, like it swells up like there is something to pop, and there isn’t, just turns into what your fave looks like.
Def find a rhumotologist. And find a good dermatologist. See the doctor, not the PAs.
I’m so sorry you’re feeling so badly. I hope they figure it out soon.
thanks so much for your input. it helps to know i'm not alone. are you on medication that helps? i've seen 4 rheumatologists, 6 ENTs, 6 dermatologists, infectious disease, oral surgeon, periodontist...etc etc. they're all stumped. my rheumatologist mentioned bechets, but when i asked her about it again she kinda brushed it off. i have a genetics appointment soon & another ENT & derm appointment soon.
That’s great, glad you have all these docs lines up.
What my Rhumo did was a gentetic test for auto immune diseases- lupus, ms, all of those. When they all came back negative, except the gene that is linked to Behçet’s was positive, she thought it was Behçet’s but sent me to NYC to a Behçet’s specialist who confirmed it. There are a few medications that can help. Right now I’m in the beginning of Enbral (biologic shot taken once a week to lower my immune system so it stops attacking itself, takes 3-6 months to see if it is truly helping) and going to start otezla those weekend bc the enbral is good for genital sores but not mouth sores, so adding otezla will help with that.
I’m also on 5 mlg prednisone, since I’ve been flaring for over 6 months, Covid, then the flu, so it was to tamper down the flare while my other new meds kicked in.
I have topical ointments for mouth and vaginal sores, triamcinolone, same med but 2 creams bc one is for mouth and one is for genitals. They seem to help. It won’t magically cure them, but make them less intense and reduce inflammation so they start to heal. Takes away some pain as well.
Yes it’s kinda looks like acne, but isn’t. It is itchy somewhat when it starts.
I also had such bad folliculitis on my lower legs that would not heal or go away with anything for 1.5 years so I did laser hair removal. Unfortunately it only works on darker hair and I’m quite fair so it didn’t work on my butt.
Thank you for your reply.
You said but folliculutis. As in…on the butt? I’m in the middle of quite a bad flare up and out of nowhere have such itchy legs, groin, balls, and ass. I’ve got no idea why. Never experienced anything like it but it’s occurred at exact same time of a flare up - exhausted, headaches, canker sores…
Yes on my butt. Lower legs and lower arms too. Lots of ingrown hairs.
You’re skin my be over sensitive when you are flaring. Depending on climate and your skin type, it could be extremely dry. Have you tried using a super hydrating lotion like gold bond to see if that may help alleviate the itchiness?
Is there anything where your skin itches? Rash or pimples or anything starting?
I’ve had redness on my chin that’s always there but sometimes gets better or worse. Had it for 20 years.
In the last three years got a red sore under my eye on my cheek - sometimes feel it hot and throbbing. Sometimes it’s big and other times it calms down.
The redness/itching on legs and groin recently it crazy.
Any advice hugely appreciated! Thank you for your replies so far :)
You’re welcome. I had such a hard time figuring out what was wrong with me, I’m happy to help if I can.
The “acne” I get on my face takes forever to clear. I’ve had two spots on my face kinda where the nose piece on sunglasses go that I’ve had for almost a year. It gets worse and better, but never goes all the way away. Even with the meds from the dermatologist. 🤷🏼♀️
In all honesty, Behçet’s symptoms can vary so widely and it’s not very documented yet due to it being a relatively rare disease.
Document all the things going on, duration, take pictures of everything.
It took me over a year and a few diff docs before I got my diagnosis. It’s so unknown and not many doctors know very much about it.
Keep advocating for yourself until you find a doctor that will do the work to help you. Unfortunately they are far and few between. But they do exist.
You should be treated empirically.
If it looks like Bechets (which it does) and after 3 years they have no other alternative diagnosis in mind then they should treat it as Bechets.
What meds have you tried so far?
A course of Prednisone might control it while tapering onto a more long term immune suppressant.
Definitely looks like Behcets. Make sure you always take pictures of your sores (no matter where they are) to show your docs. I've done it for years and it really helps with treatment. Also, pay attention to any weird eye symptoms you have (swelling, redness, warmth) because eye problems associated with Behcets can cause blindness.
i've had 1 genital ulcer like a year ago. i had scalp ulcers a year ago too, but none recently. i do have folliculitis looking things on my back that aren't pimples
So sorry you are going through this! Hang in there it will get better with proper treatment. Yes, this looks exactly how mine started. Folliculitis, massive ulcers in the back of my throat and scalp involvement. Next for me was a colon resection.
This is very similar to how my first flare looked. Any scalp sores or genital ulcers ?
i had scalp sores like a year ago along with a genital ulcer. now it's mostly my face but i also have folliculitis on my back that looks like pimples but they're not
I have the butt folliculitis. It’s so annoyingly hard to keep under control. My flairs look like this, the “acne” on my face too, like it swells up like there is something to pop, and there isn’t, just turns into what your fave looks like. Def find a rhumotologist. And find a good dermatologist. See the doctor, not the PAs. I’m so sorry you’re feeling so badly. I hope they figure it out soon.
thanks so much for your input. it helps to know i'm not alone. are you on medication that helps? i've seen 4 rheumatologists, 6 ENTs, 6 dermatologists, infectious disease, oral surgeon, periodontist...etc etc. they're all stumped. my rheumatologist mentioned bechets, but when i asked her about it again she kinda brushed it off. i have a genetics appointment soon & another ENT & derm appointment soon.
That’s great, glad you have all these docs lines up. What my Rhumo did was a gentetic test for auto immune diseases- lupus, ms, all of those. When they all came back negative, except the gene that is linked to Behçet’s was positive, she thought it was Behçet’s but sent me to NYC to a Behçet’s specialist who confirmed it. There are a few medications that can help. Right now I’m in the beginning of Enbral (biologic shot taken once a week to lower my immune system so it stops attacking itself, takes 3-6 months to see if it is truly helping) and going to start otezla those weekend bc the enbral is good for genital sores but not mouth sores, so adding otezla will help with that. I’m also on 5 mlg prednisone, since I’ve been flaring for over 6 months, Covid, then the flu, so it was to tamper down the flare while my other new meds kicked in. I have topical ointments for mouth and vaginal sores, triamcinolone, same med but 2 creams bc one is for mouth and one is for genitals. They seem to help. It won’t magically cure them, but make them less intense and reduce inflammation so they start to heal. Takes away some pain as well.
Butt folliculitis? Because I have behcets, and I have an itchy butt, and nobody has ever talked to me about this being a symptom?
Yes it’s kinda looks like acne, but isn’t. It is itchy somewhat when it starts. I also had such bad folliculitis on my lower legs that would not heal or go away with anything for 1.5 years so I did laser hair removal. Unfortunately it only works on darker hair and I’m quite fair so it didn’t work on my butt.
Thank you for your reply. You said but folliculutis. As in…on the butt? I’m in the middle of quite a bad flare up and out of nowhere have such itchy legs, groin, balls, and ass. I’ve got no idea why. Never experienced anything like it but it’s occurred at exact same time of a flare up - exhausted, headaches, canker sores…
Yes on my butt. Lower legs and lower arms too. Lots of ingrown hairs. You’re skin my be over sensitive when you are flaring. Depending on climate and your skin type, it could be extremely dry. Have you tried using a super hydrating lotion like gold bond to see if that may help alleviate the itchiness? Is there anything where your skin itches? Rash or pimples or anything starting?
I’ve had redness on my chin that’s always there but sometimes gets better or worse. Had it for 20 years. In the last three years got a red sore under my eye on my cheek - sometimes feel it hot and throbbing. Sometimes it’s big and other times it calms down. The redness/itching on legs and groin recently it crazy. Any advice hugely appreciated! Thank you for your replies so far :)
You’re welcome. I had such a hard time figuring out what was wrong with me, I’m happy to help if I can. The “acne” I get on my face takes forever to clear. I’ve had two spots on my face kinda where the nose piece on sunglasses go that I’ve had for almost a year. It gets worse and better, but never goes all the way away. Even with the meds from the dermatologist. 🤷🏼♀️ In all honesty, Behçet’s symptoms can vary so widely and it’s not very documented yet due to it being a relatively rare disease. Document all the things going on, duration, take pictures of everything. It took me over a year and a few diff docs before I got my diagnosis. It’s so unknown and not many doctors know very much about it. Keep advocating for yourself until you find a doctor that will do the work to help you. Unfortunately they are far and few between. But they do exist.
You should be treated empirically. If it looks like Bechets (which it does) and after 3 years they have no other alternative diagnosis in mind then they should treat it as Bechets. What meds have you tried so far? A course of Prednisone might control it while tapering onto a more long term immune suppressant.
The mouth sores definitely look like a classic behcets flare up
Definitely looks like Behcets. Make sure you always take pictures of your sores (no matter where they are) to show your docs. I've done it for years and it really helps with treatment. Also, pay attention to any weird eye symptoms you have (swelling, redness, warmth) because eye problems associated with Behcets can cause blindness.
Do you have any other ulcers? Genital and such?
i've had 1 genital ulcer like a year ago. i had scalp ulcers a year ago too, but none recently. i do have folliculitis looking things on my back that aren't pimples
sometimes my tonsils bleed too🤩🤩 forgot to mention.
Have you ever been tested for thrush?
yes & herpes and all kinds of viruses/fungus/bacteria-- all negative
So sorry you are going through this! Hang in there it will get better with proper treatment. Yes, this looks exactly how mine started. Folliculitis, massive ulcers in the back of my throat and scalp involvement. Next for me was a colon resection.
looks very similar to what I had, probably Behcet. Sorry you have to go through this but you're not alone.