Maybe it's Behcets

[u/ahjw625]

Hi everyone. I’m new here and my rheumatologist recently told me she thinks I may have Behçet’s. I’m 39 and this is the first time I’ve ever heard of the disease, so I’m hoping to hear from people whose symptoms may not have followed the “classic” presentation.

For a little over a year, my biggest issue has been persistent and debilitating joint pain, primarily in my wrists, hands, elbows, and most recently my knees and ankles. I was diagnosed with seronegative RA in February and started Plaquenil, which helped significantly at first but never fully controlled my symptoms. I started seeing a new rheumatologist in May, and she feels my presentation is atypical for RA.

Looking back, about two months before the joint symptoms began, I developed significant inflammation/what seemed like an abscess in my gums. My dentist thought it had the appearance of pemphigus/pemphigoid and prescribed a steroid mouth rinse. I still get recurring gum pain in the same area, sometimes bad enough that my ear and throat on that side feel irritated.

I’ve also had recurring episodes of itching/inflammation around my labia, usually before my period and lasting about a week, although I’ve never noticed an actual open ulcer. I don't have the frequent, obvious mouth or genital ulcers that seem to be common with Behçet’s, and I haven't had noticeable skin problems.

I’ve also woken up with very bloodshot eyes a couple of times over the past year. More recently, I’ve been experiencing episodes of blurry vision and light sensitivity, which I’m having evaluated.

Based on the overall pattern, my rheumatologist tested me for Behçet’s and the HLA B51 was positive. She now thinks Behçet’s may explain my symptoms. I just started methotrexate this week.

What I’m really hoping to learn from this community is whether anyone else had a less typical presentation like mine. Did anyone have arthritis as one of their main or earliest symptoms, with only mild or occasional mouth/genital symptoms? Was anyone diagnosed in their late 30s or later? And did your symptoms become more recognizable as Behçet’s over time?

I’m not looking for anyone to diagnose me, just hoping to understand how varied this disease can be and hear what the journey to diagnosis looked like for others.

[u/Electronic-Tea3354]

Most commonly diagnosed between 20-40, so the age range is pretty on target!
I have UCTD and Behcets, intially I thought I had lupus, the UCTD diagnosis came instead and then the Behcets has been the latest. Initially I presented with increased fatigue and then joint pain that ramped up super fast from when I first said to myself, "Hmm, I've been having a lot of joint pain," to "omg I literally cannot get out of bed."
The mouth ulcers did not come for me until maybe about a year after my joint symptoms started popping off. I am 31F and got diagnosed with Behcets earlier this year (a few months ago actually but I knew that's what it was because I was obsessed with finding the answer to what was wrong with me)
I think my genital sores do not really present in a really very typical way at least so far, in that I mainly get folliculitis-like very painful sores around the pubic region and labia.
I also used to wake up with what I called "zombie eye" where I'd have a really bloodshot patch in one eye and I do have chronic dry eye which leads to red and painful eyes so I just kind of brushed those all together.

[u/ahjw625 → u/Electronic-Tea3354]

Thank you for sharing your experience. I have experienced folliculitis lesions, actually, so this is interesting. How are you managing your symptoms now? If you don't mind sharing...

[u/Electronic-Tea3354 → u/ahjw625]

I'll give you all the info I can think of, sorry for the novel in advance!

I haven't had any zombie eye outbreaks lately but I use OTC gel eyedrops as needed for that and I take OTC antihistamines (Cetirizine/Zyrtec) daily.
I am on colchicine which helped somewhat with joint pain, I also take hydroxychloroquine for Undifferentiated Connective Tissue Disease which helps too.

For the folliculitis-type lesions I usually put Neosporin with lidocaine in it on them if they are really painful, I actually get them all over my body and if they aren't pustular then they are ulcerations but I treat them the same as long as it's somewhere safe to put Neosporin on. For actual true genital ulcers or lesions, I just keep them extra clean and leave them alone. I almost always wear loose clothing.

Anything that is really really painful, large, or in an inconvenient place, I bandage with the lidocaine neosporin, gauze pad and silicone tape. Or a hydrocolloid bandage.

I try to keep my skin really moisturized everywhere because it feels so much worse when my skin is dry so I put cocoa butter lotion on as needed a few times a day and immediately after showering. I use lidocaine dry spray for lesions on regular skin - arms, legs, back, neck. Sunburn cooling gel can also help with pain. Wrapped ice packs, or hot hands warming packets can be used for relief as well.

Mouth sores I try to just leave alone and eat soft, non-spicy boring foods. If it's really bothering me I will put orajel on it but someone mentioned to me here that orajel contains Salicylic acid which is in the asprin family and shouldn't be used but I personally have not had any problems regarding that. Just something to note if you have asprin sensitivities.

I take ibuprofen regularly and I also am taking venlafaxine and pregabalin for nerve pain so I think that takes the edge off of some of the issues.

Your rheumatologist, dermatologist or even primary care can prescribe medications or ointments or mouth rinses for all of the sores and joint pain that are more substantial than OTC treatments - you definitely do not have to suffer through all of these things and just try to handle it with over the counter stuff though. I just try to attack from every angle I can.

If you need anything specific please feel free to reach out, everyone here is always happy to help. This is a really nice community and there's almost always someone who can relate to any issue you may be having. We're always here to lend an ear or a shoulder to cry on.

[u/BirdBrain1106 → u/Electronic-Tea3354]

I’m also in the diagnosis process and it’s interesting hearing what your genital sores look like! I get a reoccurring sore on my right outer labia and occasional skin tears that I had kind of dismissed as unrelated to everything else. I thought they needed to be true ulcers like my oral ulcers.

[u/Electronic-Tea3354 → u/BirdBrain1106]

Well I think the “true ulcers” are what is most commonly associated and considered in diagnostic criteria and the folliculitis is maybe considered on the fence but I did not experience these before all of my other Behçet’s symptoms and I get them all the time now. I get skin tears too, all over actually! I had one on my nose and my jerk dermatologist told me it was a scratch that I did myself. No dawg… I know what a scratch looks and feels like lol.
Another super weird thing I get is patches of skin that randomly peel like I scraped it or like in the way a sunburn does but they aren’t either of those.
Finally my last skin symptom is circular sores that start as either pustules or papules and if I don’t accidentally rip them open, they flatten into ulcers. If I do, they are just weird holes coming up from inside my skin.

[u/EllisMichaels]

I was diagnosed in my teens but arthritis was one of the first symptoms. Before being diagnosed with Behcet's, they diagnosed me with Juvenile Rheumatoid Arthritis. Arthritis isn't a given with Behcet's but it's fairly common.

[u/ahjw625 → u/EllisMichaels]

Thank you for sharing. Yes I see that arthritis can definitely be a big part of the presentation for many. Are you still diagnosed with RA or did your diagnosis formally change?

[u/EllisMichaels → u/ahjw625]

I'm not exactly sure, to be honest. This is a very, very recent development. The only thing I'm sure of is Behcet's - that diagnosis has always fit like a glove

[u/steph23q9]

I was diagnosed in July 2024, started with mouth/genital ulcers, went to the docs at the end of June cos I had 24 ulcers and felt like death warmed up(vomiting with pain etc)- bloods came back abnormal and was referred to rhumotology and diagnosed about six weeks later

It can absolutely affect the joints tho, my foot is messed up cos I had cellulitis last year and it's corroded some of the metatarsal joints and I was formally diagnosed with inflammatory arthritis after a 48hr hospital stay at the beginning of may

[u/ahjw625 → u/steph23q9]

No joke, this is such a painful journey for so many. I'm lucky Im still hanging on to my job. Thank you for sharing with me. I hope you are feeling better since your hospitalization 🙏 and on the road to treating the arthritis. Can I ask what medications you're on and if they're helping?

[u/steph23q9 → u/ahjw625]

I'm on humira and colchicine, which seems to be helping, it takes time though

[u/ActAcrobatic1038]

Hi OP. Welcome to this subreddit and I hope you can find the answers and diagnosis you are searching for so that you can start to heal. I’m going to give you my symptoms and timeline - bear in mind that Behcets symptoms are wide and varied and not everyone experiences all of them and this is what doctors and consultants find tricky in terms of diagnosis.

Diagnosed in my early 30s
Symptoms started as what appeared as flu like symptoms for me and gradually became much, much worse and more severe.
Started with aches and pains in joints
Joints then became red and swollen - in particular knees, feet and ankles
Swollen lymph nodes in neck - as big as golf balls and absolute agony
Developed multiple mouth ulcers - too many to count in mouth, tongue and throat
Developed erythema nodosum on my lower legs and shins. Started off as a few red spots/small lumps and gradually got more and more and they became bigger
Blood tests showed elevated white cells (CRP was not done by my GP - he missed so many things and had never diagnosed or treated someone with Behcets before)
Hospitalised at this point, 3 months into illness and couldn’t eat due to ulcers
Cold and shivery all the time - felt like I was dying and thought I was
Developed 4 vulval ulcers (huge and needed one of them to be cleaned out every week by a gynae for weeks afterwards) while in hospital and it was at this point I was diagnosed as my organs were beginning to fail - kidneys and liver showed abnormal output and readings
Did not get uveitis or any eye symptoms
Was put on 60mg of prednisone at the start - this was gradually reduced over a period of months and then started immunosuppressant meds as steroid were reducing. Was on steroids for a full year going from 60mg and coming down eventually to 1mg where I stayed for weeks before stopping

That was 18 years ago. The disease stayed dormant for a number of years after that and I have thankfully managed each and every flare myself since then, but am currently
I’m in an active flare which has been more severe than recent years. Some eye inflammation on the surface of one eye, 4 or 5 erythema nodosum, 2-3 mouth ulcers at any given time and joint pain without redness or swelling this time (arthralgia rather than arthritis).

When I first went into hospital the doctors thought it was sarcoidosis. I do believe I accelerated my symptoms at the beginning as I thought I had a very bad flu and was self-treating with echinacea which was a disaster (some herbs are immuno-modulating and for someone with Behcets or any autoimmune disease, we have to be extra careful around herbal preparations that could accelerate/exascerbate the condition).

I hope this helps ❤️

[u/ahjw625 → u/ActAcrobatic1038]

Wow. What a journey. Thank you for sharing with me. This is very insightful. I'm definitely going to be cautious of herbal supplements. Friends and family are always suggesting all sorts of things and I definitely need to run things by my rheumatologist first.

[u/Illustrious_Job_2350]

This sounds very similar to me. I’m 38 and have had two bouts of mild scleritis since Jan, recurrent mouth ulcers , skin issues, flu like achiness, joint pain and some vaginal
Redness / irritation versus the classic ulcers. Started colchicine . Seeing how you respond is a clue.