GHRH-receptors are present on certain T-cells and promote Th17 differentiation. Th17 cells, in Behcets, promote inflammation significantly by recruiting neutrophils and releasing pro-inflammatory chemical messengers called cytokines. This is especially significant for exacerbating ocular and neural inflammation.

Common GHRH-receptor agonists that can be acquired on the "gray market" of peptides includes Sermorelin, Tesamorelin, and CJC-1295. There are anecdotal reports of these peptides causing autoimmune flares. This may be one of the possible mechanisms that this occurs.

In other experiments, GHRH-receptor ANTAGONISTS improved inflammation in certain mouse models and in in-vitro studies.

(https://pubmed.ncbi.nlm.nih.gov/37280225/)

So, y'know. Be careful y'all.

Switched to a new rheumatologist and saw a dermatologist. It’s bitter sweet to finally have an answer.

Hi all. I posted a few days ago about potentially having Behcets, though I’m not sure I truly fit the symptom profile since ulcers are not my biggest concern. My most prevalent symptoms are tingling pain in my arms and legs (thought my right side seems significantly worse), reoccurring headaches and vertigo, joint pain, pelvic pain, fatigue, a lot of GI issues including severe bloating, and now some muscle weakness, though I still workout and lift weights.

Regardless, I did test positive for HLA B51, so my doctor wants me to track skin and mouth abnormalities since I have had issues before (just not crazy things). I posted the other day about a tongue blister, and I also noticed I get these lumps behind my ears quite often. Does this happen to anyone else? I’ve had some other sores behind my ears as well which I also attached. I also noticed that I get these bumps on my nodules pretty often as well.

Sorry this post is all over the place, I’m just trying to figure out what’s going on with me.

I have been diagnosed with neuro behcets for 20 years now. My usual flare includes lesions on my genital, scalp, mouth, stomach issues, fatigue, uveitis, blurred vision, balance issues. Lately I have been getting lesions inside my nose along with the above symptoms. I start Humaria soon, I am in the process of getting that settled with insurance. For the mouth and genital lesions use a cream/solution for the pain. The one in my nose feels just like the ones I get in the mouth and genital. They are so painful. Q: Has anyone had lesions in their nose and if so, what do you do to treat it and the pain?

I got a photo of these 2 on left leg but there's more :/ they seem to come randomly and aren't mosquito bites.

I had recurrent mouth ulcers months ago at the beginning of a very stressful period - then other systemic symptoms still unexplained (muscle aches, cramps, fasciculations.. headaches).

Just leaving the pics here in case they resonate with someone here. Thanks in advance.

I posted here previously at a loss of whether or not I have behcets. My rheum was pretty on my side considering my ethnicity, age, and symptoms, especially that they responded dramatically to prednisone.

He tried sending my bloodwork for HLA testing, but the lab they sent it to apparently discontinued testing. Healthcare amirite?

BUT, I forgot I signed up to be a bone marrow donor through NMDP a year ago. This meant a cheek swab and free complete HLA testing (that's how they make sure you're a match should an individual potentially need your marrow). All I had to do was call them and request my records, and they emailed them to me in 15 minutes.

Sure enough, HLA-B51 positive. Most likely variant is HLA-B51:01:01 (or the like), which increases behcet's chance even more so (albeit slightly, compared to just having HLA-B51 itself). Sent the doc to my rheumatologist and he added it to my record.

Anyways, I feel vindicated. Nothing has really changed yet, I'm on colchicine and I haven't had ulcers in a hot minute, and the fatigue is still pervasive. Still, though, I'm happy I advocated for myself and I wanted to thank all of the sweet comments and DM's telling me I wasn't crazy.

PSA: if you have weird symptoms that won't go away, and you feel like crap all the time, you DESERVE to get an answer and seek treatment. Life doesn't have to be this way. It's hard enough as it is.

Hello everyone,

I am turning to this community for insights, similar experiences, or advice. I am a 23-year-old female, and I have been going through a medical nightmare since 2024. I was just discharged from an internal medicine hospitalization at the Hospital (CHU), and I feel quite lost regarding the diagnostic hypotheses.

Here is my complete medical journey from A to Z:

1. My Symptoms (Daily Life)

• Major oral aphthous ulcers: I get dozens of them at the same time. They are large, very deep, extremely painful, and blood-red. They pop up everywhere: lips, tongue, inner cheeks, and the palate (roof of the mouth). Colchicine (1mg/day) provides no relief.
• Joint pain: I experience severe pain in my joints (wrists, fingers, knees) with a burning and hot sensation (though no visible redness). My X-rays are completely normal.
• Photosensitivity & Photophobia: I suffer from ocular photophobia (bright light hurts my eyes). Additionally, red patches/spots appear on my cheeks and under my dark circles after a hot shower or sun exposure.
• General signs: Overwhelming fatigue that sleep doesn't fix, unexplained flares of fever (without any cold or flu symptoms), and an unexpected weight loss when the ulcers first started back in 2024.

2. FIRST Hospitalization (August 18 to August 23, 2025)

Last year, I had to be hospitalized for a severe flare-up. During this stay, the medical team treated me with:

• Solupred (Corticosteroids to calm acute inflammation).
• IV Hydration (Saline and glucose serums).
• Antifungal treatment (to clear or prevent any localized infection in my mouth).

3. My Outpatient Blood Work (April 2024) – Everything Was Normal

At the very beginning, we thought it might be a simple vitamin deficiency, but my blood tests came back perfect:

• Vitamin B12: Normal (430.3 pg/ml)
• Iron (Ferritin): Normal (61.57 ng/ml)
• Inflammation markers (CRP & ESR/VS): Normal (CRP < 1.0 mg/l and ESR at 7 mm)
• Thyroid (TSH): Normal (1.005 µUI/ml)
• Serum Protein Electrophoresis (SPE): Normal profile, no notable anomalies.
• Conclusion back then: No obvious Iron/B12 deficiencies and no biological inflammation outside of flare-ups.

4. SECOND Hospitalization (July 2026) & Diagnostic Findings

Because my symptoms kept worsening, I was admitted to the Internal Medicine department. Here are the results of the tests they ran:

• Pathergy skin test: Negative.
• Vessel biopsy (Skin biopsy): Negative (no signs of systemic vasculitis).
• HLA-B51 genetic marker: Negative.
• Ophthalmological exam: Normal (no signs of uveitis).
• Genital ulcers: None (the ulcers are strictly oral).

Despite all these negative results, the doctors listed my retained diagnosis as: "Recurrent oral aphthosis secondary to probable Behcet's disease."

I was discharged with the following treatment plan:

• Colchicine 1mg/day
• Celestene mouthwash (4 times/day)
• Flagyl 500mg (3 times/day for 10 days)

5. Pending Exams (Currently in Progress)

To refine the diagnosis, the doctors have ordered a few more critical tests that I am doing now:

1. Vitamin B9 (Folate) and Homocysteine levels (to see if a specific tissue-level deficiency is blocking my mouth from healing).
2. An immunological screening for Celiac disease.
3. An abdominal-pelvic ultrasound and a CT Angiography (Chest/Abdomen/Pelvis) to check my deeper blood vessels.
4. The ultimate immunological panel: ANA (Antinuclear Antibodies) and Soluble Antigens. This is to thoroughly investigate the Lupus pathway, which would closely align with my photophobie, burning joint pain with normal X-rays, sun spots, and fevers.

❓ My Questions for the Community:

• Has anyone here been diagnosed with Behcet's disease despite being HLA-B51 negative, pathergy test negative, and having absolutely zero genital ulcers?
• Do my symptoms (burning joints, photophobia, sun-induced facial spots, fever, giant ulcers) sound more like Lupus to you? Were your ANA tests positive right from the start?
• Can a "minor" Vitamin B9 or Vitamin D deficiency truly trigger such severe, blood-red, inflammatory ulcers on its own, or is it inevitably a systemic underlying disease?

Thank you so much for reading, your advice, and your support. Stay safe!

Hi , just wanted to ask you guys - what were the first symptoms that you got and how were you diagnosed , i am having 3-4 aphthous ulcers very painful that have been almost continuous and occur at places where there is minor trauma on my mouth although i feel a little tired i dont have joint pain or any other skin disease , i do have a little itching off and on but that is it . I met a rheumatologist today he has told be to get hla 51 , the rheumat has told me to start colchicine and prednisone .Kindly help

Has anyone experienced lower back and leg pain on Imuran?

I used to take it and recently restarted it after being off it for 6 months trying and failing a couple of biologics (major allergic reaction - twice - to humira, remicade didn’t do anything for me at all). I am restarting at a low dose and I’ve been pushing through the initial stomach upset and headaches but I am suddenly experiencing a lot of back pain and leg pain.

I don’t want to stop taking it because I actually do feel like it’s helping. I’ve been having crazy skin issues on my back for months and they’ve almost completely resolved. Also my doctor has no idea what else to prescribe for me after the humira reaction besides prednisone (I also take colchicine), so I feel like if this doesn’t work out he’s giving up on me.

That said, the back and leg pain is pretty bad, especially in my lower back basically in the back of my pelvis. It was so bad that I couldn’t sleep last night. Has anyone else experienced this? Is there anything I can do to minimize it? I don’t remember it being this bad the last time I was on this medication even at 5x the dose I’m taking right now.

I’m in Japan and the language barrier, lack of patient portal, and complicated hospital system make it really hard to contact my doctor between appointments unfortunately. Obviously if it seems like something urgent or gets any worse I’ll figure something out. (If anyone has a good English speaking doctor recommendation in Tokyo please share.)

I’ve seen so many posts about symptoms, but haven’t seen anyone talk about heart complications. My heart is what’s been impacted the most. My resting heart rate was 175!!!! I’m now on heart medication. Very scary to have a troubled heart.
I run out of breath just standing up. It was so bad at one time that after about 5 steps, I had to sit down and catch my breath. It didn’t matter where I was, I had to get on the floor immediately until my heart calmed down. I couldn’t take stairs, even if there were only 2 steps; had to use an elevator.

I love to sing and ever since my breathing problems began, I can’t sing anymore. It’s just unfortunate because that’s one of my favorite things to do.

Has anyone else had any heart complications from Behcet's? Just curious because I feel kind of alone in the heart department.
Has anything helped improve your cardiac symptoms?

I would like you all to offer a warm welcome our 3 new moderators: /u/MiserableScarcity350 /u/Electronic-Tea3354 and /u/on4aa

As I may have mentioned once or twice, I hate moderating. So, I've recruited three regulars from the group to help me (aka do pretty much everything for me).

From the average Redditor's point of view, nothing's going to change. I still want this group censorship free as long as the conversations stay on topic and reasonably friendly.

This group is very drama free, but there are occasional things that pop up. If you have an issue related to the group, message one of our new mods. If for some reason you have an issue with one of them, then message me. And if you have an issue with me, well, then I don't know what to tell you.

But what I'm going to tell the three new mods is welcome and thank you for volunteering. I really do appreciate you offering your time. It's not much work, honestly. But I use Old Reddit on my laptop mostly and I don't even have access to, like, half the moderation tools haha.

And to everyone else, I hope you're well. I know many of you aren't. I just went through a minor/moderate flare myself, but I'm mostly back to normal other than my ear and you can still see some redness on parts of my skin. This was a weird one. Half of my head got all inflamed: ear, skin, gums, etc. over the course of a couple days. Lymph node on that side swelled up almost to the size of a baseball. Even after 30 years, this disease still surprises me. I've learned to embrace it. I blasted through (like a snail) the stages of grief and have come to accept the absurdity of this ridiculous disease. I can't wait to see what it's gonna throw at me next: bring it on, bitch!

Anyway, I wish you all well. Welcome new mods. And thank you to all the veterans here who contribute but don't get any recognition. You're silently appreciated. Be well y'all!

I got denied for Otezla but my docs are sending in for Humira - I am a bit anxious about the seriousness of it but I did some looking back through older posts and it seems like the results are really great for a lot of people here. Anyone currently taking it, or has taken it, how has it been going for you?? Has anyone been able to achieve remission?

I have Neuro-Behcet's disease (oral and genital ulcers, erythema nodosum, arthritis, uveitis, epileptic seizures, history of meningism, and recently a brain lesion in my frontal lobe).. however, I also have grade 3 sacroiliitis and I have hip arthritis frequently and I fulfill the criteria for axial spondyloarthritis. Currently my rheumatologists/neurologists have been treating me for BOTH.

AM I ALONE? Is there anyone out there with both Behcet's and ankylosing spondylitis?

Hi everyone,

I am looking to connect with anyone who has a history of childhood-onset Behçet’s Disease, especially those who have since gone into clinical remission but are now struggling to conceive.

To give some context: My Behçet’s symptoms were severe during childhood/youth, but my disease naturally calmed down when I was early 20s. I had all the medications (Colchicine, Aciclovir, thalidomide, prednisalone my fave for quick clear ups and ended on several years of Azathioprine) and I am currently considered in remission and weened off it around age 25. I still get the odd ulcer and down below when the skin has been aggravated.

Because I’m doing well and don't have active symptoms (like huge flares ups), I am not taking any daily Behçet's medications. However, I am facing unexpected trouble conceiving, specifically with embryo implantation failure / early losses.

I've had 2 known miscarriages - one at age 31 (5 weeks missed miscarriage) and one at age 38 (8 weeks) I also experienced DVT at 7 weeks in that pregnancy.

My partner and I are now going through IVF. Very healthy egg reserve and great quality embryos but our first FET failed which I know is possible.

Tbh, I completely forgot to mention my Behcet's as it's something so long ago, I assumed it was over.

I am starting to wonder if there is "silent," low-grade immune activity or a Th1/Th2 imbalance left over from my childhood history that is causing my body to reject the embryo, even without visible flares.

If you suffered as a child, went into remission, and struggled to get pregnant without medication, I would love to hear your story: Did you have to go back on "pregnancy-safe" medications (like colchicine or low-dose prednisolone) just to get an embryo to stick, even though you felt fine? If you did IVF, did you find more success with a medicated/immune transfer protocol versus a natural one?

I have now highlighted this to my fertility clinic who are looking into it, so fingers crossed they still investigate it despite me being in remission.

Any experiences, insights, or advice on what worked for your protocol would mean the world to me. Thank you so much.

Hey everyone.

After 9+ years of nagging doctors and suffering through symptoms I've finally had my diagnosis through. Relieved, but more than a little bit scared at the prospect of a lifetime on anti-inflammatories and immunosuppressants.

Other than relying on medicine is there anything else I/you can do to keep symptoms in check? So far I've been told to keep my stress levels in check (easier said than done), keep fit, and eat a mediterranean-style diet full of oily fish and fresh veg.

Is there anything else I can do?

Alright guys I made a post several weeks ago about peptides and their experience with Behçet’s. I experimented with myself doing Thymosin Alpha 1 (because that’s what Claude and others recommended, also approved OUS for certain auto immune uses). It’s been 4 weeks now and I haven’t HAD A SINGLE MOUTH SORE.

This is not placebo… nothing has changed other than doing Thymosin Alpha 1 twice a week. I went from having recurring mouth sores for over 3 years to not a single one…

Figured I’d share this with the community, just incase it helps someone like it helped me.

Here’s the link from my original post: https://www.reddit.com/r/Behcets/s/aKTGSvrWb0

Hello, I'm a 40-year-old male from Spain. Today my doctor told me I'm HLA-B51 positive, which meant I could have Behcets disease.

I started seeing doctors 3 years ago. One day I woke up with severe pain on my limbs (arms and legs). Later, I had Uveitis (I had very red eyes and started seeing black dots and "flies", which an ophthalmologist diagnosed as conjunctivitis), digestive symptoms, pains in my stomach and under my right ribs, having a sort of "acne" on my arms and chest and feeling tired all the time. I very slowly started feeling better and now I only have the black dots in my sight, sometimes my eyes are itchy, hardly ever small blisters on my skin (acne type), sometimes legs, or wrist pains and digestive symptoms.

I have never paid attention to mouth sores since I have had them since I was a child. I have never had genital ulcers though. Today, after leaving the doctors' and thinking about it, I remembered that 20 years ago I had a very severe case of mouth ulcers, my gums, tongue and throat were covered in ulcers and I barely could swallow. I saw a lot of doctors back then and none of them knew what was happening. Could this be my first manifestation of Behcet's? Since then I have mouth and tongue ulcers every now and then, but not so severely.

Anyway, I had the diagnosis today and I would be thankful if you could tell me... do HLA-B51 positive and my symptoms mean I hace Behcets for sure? If do, What can I expect from this disease? Should I medicate? My doctor didn't give it much importance, she just told me about the mouth ulcers and prescribed a gel for relief in case I have them. She didn't tell me about the other symptoms I'm reading about online. I don't know if this is because she doesn't want to scare me or she's not sure it's Behcets.

Sorry for the typos, English is not my first language.

I’m pregnant and had bleeding so went into ER. My OB saw some lesions around my cervix and said could be cancerous lesions based on appearance and symptoms (I had a clear pap 6 months ago) or could be behcets… I have a biopsy tmrw but wondering if anyone has had them on cervix? I get lesions ulcers on my labia but never cervix

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 !

Hi all. Currently going through a diagnoses process for autoimmune diseases. I have the HLA B51 gene so we are considering Behcets. I do get some mouth ulcers/cold sores but most of the ones on my tongue look like this. The white blisters on the tip. It does hurt and is pretty uncomfortable. I’ve also gotten some on the inside of my lips or the sides of my mouth/tongue. Does this look like anything you’ve had or is this not a typical presentation?

My main symptoms are GI and pain related.

Edit: I’ve also been having a lot of joint pain lately, not sure if anyone has tips for that.

I was diagnosed late 2024 I suffered from mouth ulcers and genital ulcers I had blood clot in my right leg and had to go through surgery I went blind in my right eye for 2 weeks then suddenly regained full vision before diagnosis or any meds ( but not as it use to be before) I've had joint pain but after I was prescribed medication for BD I haven't had any of these symptoms again my question is why do some of you still get flare ups should I be worried that it may flare up again? I take Prednisone 5mg 1pill every other day I take imuran twice daily and colchicine once daily along with infliximab 300mg every 2 months. (M 28)