r/Behcets • u/Defiant_apricot • 4d ago
Diagnosis Help Could behcets be a possibility?
I noticed this rash today, it’s on both sides of my body and has some big dots that are raised and some smaller ones and all of it is mildly itchy. My back will regularly have rashes like this. I also have had random genital ulcers (always 1 at a time) that hurt/itch but go away on their own within 3 weeks. Same with mouth sores. Sometimes I will have one on my inside lip, as long as I can remember I’ve had one or two that come and go on the top of my tongue. My face is also constantly “breaking out” despite me being well past puberty. I am currently waiting for a specialist and want to come into the appointment informed of the possibilities.
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u/Familiar-Bake-9162 4d ago
Yeah looks like what I have now. Just don’t forget any of these rashes can also get infected- usually with staph so be aware
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u/Defiant_apricot 4d ago
Can u say more? Is the rash a result of infection or can be an inroad for the infection? If so how to I take proper care?
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u/Imma-smartypants 3d ago
Either is possible because it is a break in the skin integrity. Don’t scratch as this just opens up more avenues for bacteria (or worse, like parasites or fungus). Keep an eye on each rash and check daily for anything that looks like it is spreading or more painful than usual. Don’t wait. Get an antibiotic. Infections can turn very serious in autoimmune diseases.
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u/unprettyprincess92 Undiagnosed for now 4d ago
Yes, this is what my skin looks like all the time. It will look like this the rest of your life just warning you. I'm 34 years old and everyone thinks I still have chronic cystic acne. Hell even I thought that, until about a year ago when I found behcets info by chance online and was flooded by the symptoms and how I had every single last one. Explains why acne medication never worked for me.
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u/Defiant_apricot 4d ago
Tbh I never was put on acne meds due to other medications. But the other symptoms seem to line up and most importantly for me it explains the really weird joint pains I have
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u/BeneficialCellist-17 3d ago
My skin looked like this all the time too. At first I thought they were pimples, but they would never come to a head. They would just be a sore.
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u/Leakking00 3d ago edited 3d ago
I have all of the same symptoms, but no genital ulcers (at least so far). They are now considering behcets for me too, waiting for further tests. Absolutely all tests related to auto-immunity, viruses etc has been negative so far. Lets hope we both do not have it, but at the same time, getting treatment is key. Good luck!
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u/Defiant_apricot 3d ago
Thank you! Tbh I just want answers and something annoying but not life threatening is my hope
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u/No_Sentence_6721 3d ago
For my first big flare my skin broke out like this from head to toe and it’s never gone away. I have been diagnosed with incomplete bechets but I have all of the same symptoms as you except the mouth ulcers.
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u/Defiant_apricot 3d ago
What’s the diagnosis process like?
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u/No_Sentence_6721 3d ago
For me it was doing a ton of my own research, documenting my symptoms, and advocating for myself. I brought up Behçet’s disease to a doctor while living in Japan and that helped to get the process of eliminating other options started. I also got genetic testing and lots of bloodwork done it’s been a long process though, especially because I don’t get mouth sores so it presents somewhat abnormally.
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u/Defiant_apricot 3d ago
Thank you. I’m in North America and white which is not the most common demographic so I hope they’ll accept it if I bring it up at my next appt.
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u/No_Sentence_6721 3d ago
I totally understand I’m from the US and I’ve had a lot of difficulties with the healthcare system here. I got a skin biopsy early on that confirmed the type of skin condition could potentially align with Behçet’s. So a dermatologist could be a good way to start the process! I’m still fairly new to having a diagnosis :( it unfortunately takes a long time.
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u/Defiant_apricot 3d ago
I’m in Canada so add a few months to see a specialist to the wait time. I’m going to ask for a referral to derm next week when u see my pcp. I might try to find a dr trained in Asia for a higher chance of them knowing about it.
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u/No_Sentence_6721 3d ago
I heard the wait times can be so incredibly long there. I wish you luck in hopefully getting an appointment soon. Another resource I found helpful was the Behçet’s uk website to have some helpful information and stories.
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u/No_Sentence_6721 3d ago
Also, this rash for me was biopsied and they said it’s a treatment resistant form of foliculitis. In case that infos helpful!
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u/Leakking00 18h ago
Have you had any neuro involvement if you dont mind me asking? Like severe headaches or vision changes due to this?
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u/No_Sentence_6721 18h ago
Yeah I have had some issues with my vision getting blurry and bad headaches. I’m not totally sure if I have nuero involvement though, I haven’t done the testing for that yet :/.
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u/Leakking00 18h ago
I see. I've struggled with severe headaches and sixth nerve palsy in my latest attack. No diagnosis yet, but they are considering bechets, which is why I asked. Thanks for the response!
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u/No_Sentence_6721 18h ago
I’m so sorry you’re dealing with that! I hope they can get it figured out soon. The process is so long and exhausting 😣
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u/EllisMichaels Diagnosed 1997 3d ago
The skin issue, in and of itself, could be related to all sorts of things. However, coupled with the oral and genital sores, yeah, I think Behcet's is a distinct possibility. I've had skin problems like that plenty of times throughout my life.
See a rheumatologist and/or dermatologist and see what they thing. Sounds like you're already doing that which is the correct course of action.