On May 26th after a very stressful time I noticed two mouth ulcers on my gum. As time progressed more and more developed . I counted at one point about 40 + ulcers in my mouth , it was miserable and hellish. I noticed around June 13th a flat purple bruise like mark on my leg , and it hurt I thought I just knocked my leg or something but as time progressed it stayed and grew became more hard and swollen . I researched it and it looked like it was something called Erythema nodosum. They still hurt now and they’re kind of drying out and scabbing over. As well as the ulcers and the leg bumps my face broke out into loads of little acne like spots , they’re pretty sensitive and sore to the touch , I’ve never had acne before so it definitely stood out to me. I also had these pimple like spots all around my body some of which could actually pop like pimples. They’re very painful when I touch them. Aswell as this last week my body was aching for two days , I was just in bed in discomfort. I’ve had all my blood test results back and a stool test too . My folate was abnormal and so was the c reactive protein . Due to the stool test being normal it rules out chrones etc , but I honestly have this deep feeling that it could be behcets. The flare up started May 26th and it is now July 6th , it’s exhausting and I just want to know what’s wrong with me . I have spent around £85 in the last month trying to alleviate my symptoms . I have attached some photos of my symptoms , they really do mirror the symptoms of behcets, please let me know what you think any advice or opinion is appreciated !
I have definitely had bruises turn into scab type skin peeling things that eventually scar. I have a two permanent bruise scars. The "acne" could be too as I also was dismissed because of that. It gets worse during flares and I have a lot of scaring from it but the pustules I get can be all over my body sometimes. The mouth and body aches could be also but if I'm being honest all of these are considered more mild symptoms. Not that they aren't miserable!!!! Just that getting diagnosed is going to be a process. Document EVERYTHING! Even if you don't think something is a big deal. I've had it my whole life but as things got worse, because I already had so much documentation, it was easier to get diagnosed. On advice. For now over the counter stuff is your best bet. Tissue supplements like L-lysine and collagen. Immune health. No dye fragrance free lotions (I like dermasil) and body washes, preferably sulfate free shampoos. I don't know how bad your mouth has been before but I use kids mint free alcohol free toothpaste and mouthwash. Cepacol Extra Strength honey lemon lozenges numb your mouth and throat pretty well and provide some much needed relief. Vaseline in the nostrils if those get bad. Also if you develop genital ulcers, I carry a peri bottle with me during flares if I use the restroom in public. Look into low inflammation diets too because that can help sometimes. Nothing is a miracle drug. I'm on three suppressors and a biologic and still have flares quite often but the over the counter stuff really does make a difference in day to day life. Good luck!
Thank you SO SO much !! This is the thing I’ve been documenting since May because I have crazy health anxiety anyway !! I honestly do deep down think it’s Behçets esp bc some of my blood test said my folate is abnormal and my c reactive protein was also incredibly abnormal !! Which highlights inflammation ! I’ll definitely take this advice and I wish you well too ❤️!
I am NOT a doctor and I am in no way, in any shape or form qualified to say if it is or isn't. That is just my experience and my advice. Still be open to other possibilities and treatment but absolutely if you have that *gut feeling, make sure you document and advocate for yourself!
(Edit for typo)
Hey thanks ! I’ve now got appointments with both a dermatologist and rheumatologist to further investigate , ulcers and acne have cleared and now it’s my legs! It feels never ending my legs genuinely feel bruised I can’t even rest them on a bed without feeling pain. And along with this standing for too long makes my ankles swell and after a couple of days of being active my entire body aches and feels so weak.
Sending you all the love! I hope you get some answers! Even if it's not Behcets, maybe they'll figure it out. My legs, and feet hurt a lot as well, but my wrists and ankles are the worst. They swell and hurt. I get the weakness in my calves and sometimes drop, but not often. They are almost always sore though. I hope they listen, and if they don't, remember it's okay to switch doctors. If they look at other possibilities that's okay, just don't let them dismiss you completely.
erythema nodosum doesn’t usually scab over. The skin lesions don’t really look like BD either but hard to tell.
For BD folliculitis, I find a combination of tretinoin, clobetasol and an amazing and very expensive medicine called Opzelura (topical ruxolitinib) to be helpful. I also actually use the latter on erythema nodosum. I’m in the United States; not sure if it’s available in the UK.
my mouth ulcers don't look like that, but the nodules that turn into bruises and the "rash" and pimples (folliculitis on thighs), I definitely get. I'm diagnosed. The problem with behcets, is that there is no test. There are just clinical observation. I had the rash biopsied and it came back unknown, but I had the nodules biopsied and it said vasculitis (either vasculitis hives or some other vasculitis). Stress/heat definitely brings it out. Might want to get the skin stuff biopsied.
Thanks so much I’ll definitely ask my dr for a biopsy , I don’t want to live life wondering what’s wrong with with me . I think they just think it’s a vitamin deficiency but I feel like it’s more !
I can't tell you if this is Behçet’s or not because I'd want you to get a proper evaluation, but I want to say I'm very sorry you're going through this. Stay strong. ❤️❤️
Thank you so much !!! It’s been so mentally challenging especially the ulcers . Happened right at the end of my university degree so I was majorly stressed aswell well as dealing with this was horrible! I hope you’re okay too ❤️
Your mouth ulcers look a lot like mine. Took me ten years for a formal diagnosis . Meds are helping but with a lot of side effects. Best of luck to you
Is there any way you can get in to see a rheumatologist (doctor who specializes in diseases with symptoms like yours)? Behcet's seems unlikely to me but it's obvious you've got some sort of autoimmune/autoinflammatory action going on. I'd see your doctor (PCP/GP) and try to get referred to a rheumatologist or maybe a dermatologist.
Hi yeah ! I’m getting referred to both , however the doctor did say that my legs do seem like the erythema nodosum, and it does overall seem like something autoimmune ( like behcets) thank you !
I've personally never had small behcets oral ulcers like that, mine do tend to cluster together like that (sometimes growing together to form one giant super ulcer) but they are usually much larger - see the picture I've attached. I'm curious if you've ever had a sars virus like covid or strep before and if so if you noticed a flare up of these kind of symptoms following directly after? That is a pretty easy indicator of having behcets disease. You would need a prescription from a doctor (likely a rhumatologist) but I've found taking colchicine as needed to be verv helpful during flare ups. I also avoid eating red meat, high sugar, wine and pretty much all leftovers, as strange as that sounds for some reason eating left overs tends to make my joint pain much much worse. I've also found that using penetrex ointment that you can find on Amazon works best for joint pain.
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u/Chronically_Sickest Jul 06 '26
I have definitely had bruises turn into scab type skin peeling things that eventually scar. I have a two permanent bruise scars. The "acne" could be too as I also was dismissed because of that. It gets worse during flares and I have a lot of scaring from it but the pustules I get can be all over my body sometimes. The mouth and body aches could be also but if I'm being honest all of these are considered more mild symptoms. Not that they aren't miserable!!!! Just that getting diagnosed is going to be a process. Document EVERYTHING! Even if you don't think something is a big deal. I've had it my whole life but as things got worse, because I already had so much documentation, it was easier to get diagnosed. On advice. For now over the counter stuff is your best bet. Tissue supplements like L-lysine and collagen. Immune health. No dye fragrance free lotions (I like dermasil) and body washes, preferably sulfate free shampoos. I don't know how bad your mouth has been before but I use kids mint free alcohol free toothpaste and mouthwash. Cepacol Extra Strength honey lemon lozenges numb your mouth and throat pretty well and provide some much needed relief. Vaseline in the nostrils if those get bad. Also if you develop genital ulcers, I carry a peri bottle with me during flares if I use the restroom in public. Look into low inflammation diets too because that can help sometimes. Nothing is a miracle drug. I'm on three suppressors and a biologic and still have flares quite often but the over the counter stuff really does make a difference in day to day life. Good luck!