r/Behcets

have you guys been able to have kids naturally without stopping colchicine ? especially if you have been taking it for over 19 years straight ! does it affect fertility in men ? have you got your wife pregnant while being on it ?

thanks 🙏

It’s been about a week now that I can barely walk or even move because of severe sacroiliac inflammation, despite being on Amgevita. Honestly, it feels like everything collapsed at the same time.

I’m in the middle of moving, things at work have been going really badly, and after 8 long months of physiotherapy, I had finally started getting back into sports and feeling a bit like myself again… only to end up back at square one. Mentally, it’s exhausting. I feel like every time I start rebuilding my life, something comes along and knocks me down again.

The one thing keeping me going right now is my friends. This whole experience made me realize who truly cares about me. They helped me through the entire move, checked in on me constantly, brought me food, stayed with me when I couldn’t manage on my own… and honestly, I don’t know how I would’ve handled this without them.

For those of you who’ve gone through periods where chronic pain completely took over your life: how did you hold onto hope? How did you stop yourself from feeling defeated when your body keeps betraying you just as things start getting better?

I really hope everyone here is doing okay.

My daughter was recently diagnosed with behcets after 4 years of flare ups. She’s supposed to go on tour with her high school choir tomorrow. (I’m also going as a chaperone) It’s usually something she looks forward to but she started a flare up yesterday of vaginal ulcers. She started prednisone right away, has clobetasol and 5% lidocaine (hasn’t helped much in the past). In the past she’s been in so much pain that she barely leaves her room. What do you do? Not go? Or try to tough it out?

She’s thinking about the fun she’ll miss if she doesn’t go and the pain she’ll have if she does go.

I have been feeling like I’m not really contributing enough financially to my home and I just don’t know what I can do outside the home between the ulcers, GI stuff and migraines, joint pain. I don’t know if I’d be able to keep anything. Currently I make things at home and sell them but my hands are unreliable with the lack of energy, joint pain and swelling and sales are down because of the financial strain most everyone is feeling. UGH

Hi all,

I know Reddit can’t diagnose and we need to go see a doctor. But insurance access is limited due to career situations so just trying to get some sort of clarity.

Posting this as my partner lays next to me in a lot of pain from his third flare up of mouth ulcers. This time it’s not as bad, they’re just covering his lower lip and tongue. But the previous two flare ups they were everywhere—lips, gums, cheek lining, tongue, back of throat. He was in so much pain it was like he was swallowing glass.

The 1-2 days before the ulcers erupt, he presents very sickly, with bloodshot/puffy eyes, chills, fatigue, soreness. This has been the case for all 3 flare ups.

No genital symptoms which might be strange for this condition?

I guess next step is to pay for overpriced state insurance and find a doctor to get him diagnosed. Is there anything else I could possibly do? I’m so tired of seeing him in so much pain every few months.

TLDR: I am struggling with my mental health surrounding Behcets. What do you do to get out of this “funk”?

Hey everyone! I (32/f) wanna say how important it’s been for me experiencing Behcets and having this community to turn to when I have questions. The past two years have been so intense. I started showing undeniable symptoms of behcets back in July 2024. My doctor initially tested me for measles and nothing else. When I asked for further testing I was met with “why do you want to know what’s causing this?” Beyond frustrating. I ended up moving provinces at the end of 2024 and an emergency room Doctor was able to send in referrals which got me on track to diagnosis. My pretty much constant symptoms are fatigue, brain fog and joint pain. My flare ups look like large mouth lesions, tongue lesions, my lips look so swollen even if they aren’t covered in lesions as well (which sometimes they are). It’s hard to eat, swallow, talk. I get ulcers on my hands during every major flare up. This makes already existing joint weakness and pain in my hands even worse because now there are painful lessons in the joints of my fingers. My legs as well. I’ve only had one genital ulcer and I’m very thankful for that because it was incredibly painful. I also thankfully haven’t experienced any eye issues. Since moving and seriously!!!!!! advocating for myself hard I have a pretty good team of a rheumatologist, dermatologist, internist, ophthalmologist and a naturopath.
I know comparatively this doesn’t sound so bad but it’s honestly debilitating. I was just 30 years old when this started and now there are weeks of my life I am unable to go to work. I’m single and live alone supporting myself and a kitty. Cleaning and household chores can be difficult with such little energy. I’m accepted to school in September, I’m worried the effect behcets could have on that. Honestly, I’m just really struggling with it mentally. I’m a happy person and I love life. I struggled mentally as a teen and worked really hard to learn coping skills and the power of positivity but with this it feels different to fight. I feel like I’m slower, sleepier, in pain and being held back. I really don’t like playing a victim and I know others have it so much worse. Please if you struggle with this too, what have you been doing to keep your chin up? I’m sending you guys all of my love and I appreciate you taking the time to read my story.

Has anyone applied and gotten benefits. My friends keep pushing that I try. My ankle is making it difficult to work. A few years ago I dropped out of school because of cornea ulcers. It is debilitating just not 24/7

I hope this is ok, I’m just looking for support.

I’m sitting in the hospital, it’s been Sunday for 7 minutes here and I started off Thursday at a different hospital. I’m not officially diagnosed yet but they suspect Behçet’s. I’ve had mouth sore flares since my late teens/early 20s and I’m 37 now. I’m both relieved and terrified presently. After so many years of being told to eat less acidic food and more yogurt and that I was fine, I feel like my health fell completely apart now.

They haven’t told me officially, or given me a plan yet. I’m missing work and that’s scary as a mom and generally in this economy.

If anyone would like to share thoughts, or what to expect, or anything, I’d appreciate it. It does seem like this is the likely diagnosis based on all my symptoms. I’m not scared of having a condition, I’m scared of being bad at managing it. My brother is a diabetic so I’m big on disability advocacy and thriving despite chronic illness, I just didn’t think it would be this for me now. I guess no one is prepared, right?

Well, if you read this thanks, and I hope your health is good today.

I have a very severe case of Behcet’s effecting most organs and I started Cyltezo which is a biosimilar of Humira 6 weeks ago. I’ve done 4 injections so far and all my symptoms have been amplified, no relief with anything. My doctor put that I had RA to get it approved through insurance since it’s not a conventional treatment for Behcet’s. I asked her about starting with a loading dose but she refused and said my insurance (Cigna) probably wouldn’t cover it. How many of you are in the states and started with a loading dose higher than 40mg? Did the insurance give pushback on it?

Hat jemand Otezla wegen Morbus Behcet verschrieben bekommen? Und welche Erfahrungen habt ihr damit gemacht (Wirkung, Nebenwirkungen)? Ich habe bis jetzt Colctab genommen und soll bald auf Otezla umsteigen. Nur mache ich mir Sorgen wegen den Nebenwirkungen, da ich schon mal wo gelesen habe, dass vor allem die Anfangszeit hart sein soll.

I have had multiple episodes of anaphylaxis and the doctor is considering MCAS or a food allergy to be the cause. Curious to know if anyone else with Behcets is facing this.

Hi All, I wanted to ask how to best keep the sores at bay. Do you start taking Prednisone immediately right after you start feeling a few lesions/sores popped up in your body like one or two canker sores inside the mouth? I dont want the lesions to become full blown all over my body as you all know it hurts like hell. I was wondering if immediately taking Prednisone will prevent it becoming full blown. Also please share what else do you do to keep it at bay?

Thanks for the advise and support.

Hello everyone,

My name is Basavaraj Ganjagol, I am from Karnataka. 26 Years/Male.

I have been diagnosed with *Behçet’s disease*

My current symptoms are quite severe and affecting multiple systems:

- Intestinal involvement: ulcers, bleeding, abdominal pain ( worsens after eating)

- Severe rectal pain + cuts and ulcers at anus mouth with occasional swelling

- genital lesions painful

- Nose pain and redness and oral ulcers

- eye burning and redness and pain

- painful lesions on tongue and frequent painful lesions on lips

- Intermittent fevers and severe chills

- bodyache

- Painful skin lesions on back thighs hands chest

- Painful defecation with poor passage of stool, incomplete evacuation, and frequent urge

- Severe joint pains(sometimes not able walk or stand)

- joints include knee , wrist , shoulders , finger joints

- Spinal cord/back pain( pain starts with lower back and radiates to entire spine and then pain in neck and shoulders and back head)

- Severe headaches & migrain

- Trigeminal neuralgia (facial nerve pain)

- Increasing weakness and fatigue

- significant weightloss

- Poor response to steroids (currently on Omnacortil 20 mg)

At present, I'm on *Omnacortil tapering dose and Azathioprine 50 mg*

I am looking for guidance on:

1. Is this diagnosis is confirmed or do I need to go more deeper with more experienced doctor ?

2. Whether my symptoms suggest need for early biologic therapy

3. Any advice for managing bowel symptoms and diet during active disease

4. Experiences from patients with similar neurological symptoms (like trigeminal neuralgia)

I would be very grateful for any guidance, doctor recommendations, or shared experiences.

Thank you 🙏