Behçets & esophagus : So, methotrexate under the... - Behçet's UK

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Behçets & esophagus

Amy-Tenacious1
Amy-Tenacious1

So, methotrexate under the bonnet, feeling a bit less achy and more energetic. Still, my throat pain continues, so that’s my main focus now.

Have many or any of you come up against esophageal involvement with Behçets?

“Microscopic findings showed vasculities in one case, and non-specific inflammatory infiltration mainly consisting of neutrophils in 4 cases. Our results suggest that the prevalence of esophageal involvement in Behcet's disease is rather high and occur even in asymptomatic patients, but that this usually does not result in specific abnormalities.”

pubmed.ncbi.nlm.nih.gov/122...

Any experience with this or with Chlorambucil?

11 Replies

Hello, Amy-Tenacious1

I have hiatus hernia - extremely painful episodes of not being able to swallow food - drama aside, it felt like dying but I knew it was not death’s knock because I was gratefully aware that I could breathe.

However, according to the article, 2 out of 23 enrolled patients were excluded from final analysis due to the presence of hiatus hernia, but I did not understand the science behind the exclusion.

I only skimmed through the article in the link that you provided, so am not sure if the exclusion meant that hiatal hernia has no link with BD, or if the case is so cut and dried that it did not need further study.

Best wishes

Amy my heart goes out to You! I frequently have extremely painful ulceration throat. Epiglottis! And what I assume last year of oesophegus ulceration! Couldn't be seen at hosp with Covid! Out of all areas I ulcerate I find throat is worse! Lasts weeks! Can't even cry as the muscles tense which hurts even more! Despite Oramorph I get very little relief! I just pray till the episode ends! I get many flare ups in a year! I've had loads of different chemo/biological drugs with little or no improvement.

Just finished Tociluzumab. No improvement at all!

I hope you get better soon! I'll be thinking of you and keeping you in my prayers!

Take good care Amy! Xxx

So sorry your throat ulcers are causing pain. I had these for 2 years with no relief. Then I began Rituxan infusions. 2 infusions 2 weeks apart every 4 months. Within 2 infusions my esophagus was clear

I'll have to explore into that. Thanks for all the answers. I've had a biopsy in 2012 and they noticed I had inflammation and neutrofils going through my throat and esopahgus membranes and blood coming through, but had no idea what to say about it. I always wind up in astma tests (because they always hope I would have astma and it would react to astma meds), but no. That's usually where the track ends up dry. This time I said no astma tests, you can biopsy me again if you want. Last time there wast no mention of ulcers or giant cells. But they said later on that the biopsy specimen were too small to say anything about them. That's why this article seemed interesting to me, because it included neutrophil infiltration, esophagus and Bechets in the sama article.I'll be sure to check up on Rituxan.

But even without ulcers you can have pain and inflammation in the esophagus with neutrofil infiltration. I can see articles where the condition has been treated with specifically chlorambucil. All the articles are stunt somehow and I'm trying to get a handle on how chlorambucil would work better than metotrexate? I have a meeting coming up with my rheumy (I don't get to meet him quite often), so I try to be as prepared as possible for it.

Ulceration of GI system ( mouth to colon) skin lesions, eye inflammation, & one knee swelling are my best symptoms. I am managed by the best docs in the 🇺🇸. Wishing you relief & happy days ahead

I have Behçets and Achalasia. Achalasia is a condition of the esophagus. Achalasia prevents the esophagus from squeezing food into the stomach. I actually had my esophagus removed last year and they made a new one out of my stomach.

Oh my. It seems esophagus related conditions really are a thing with Bechets. I'll definately have a talk about this with the rheumy.

I have oesophagitus frequently was told because I suffer from Ehlers Danlos this was the reason. Also have hiatus hernia also associated with Ehlers Danlos, however Gastroenterology say my oesophagitus is associated with my Behcet's. Both Behcet's and Ehlers Danlos effect my joints, Ehlers Danlos the opening and closing of sphincters is a issue so my oesophagus, and and also have heart mitral valve prolapse and regurgitation, hernia's are an issue, had horrendous hidden inguinal hernia dealt with in January 2018 after a horrendous time trying to get a diagnosis, difficult in a female as hidden away.

You need to look at everything, I am pleased to read your consultant is referring you. Take care and hope you get things sorted soon.

Hello, before I was diagnosed with Behcet’s I started having projectile vomiting. Then, the outrageous mouth sores started. I finally was diagnosed 2 years ago after having the disease for over 8 years. I’m taking colchicine, Arava and 6 week infusion Remicade. I’m better, but my body has taken a beating not knowing what I had for so long.

Hi there, yep my main symptom is severe ulceration of my throat and esophagus. I basically have no choice but to take steroids because if I let them out of control I can't eat and struggle to speak and sleep at night.

You've all given me such good insights to bring to the table on my next consultation! This is so good, because Bechets is so poorly understood like many autoimmune conditions. And when you have a coexisting condition like hypermobile Ehler-Danlos, well, then that really muddles up the situation. I just wish my throat would stop hurting. Not much to ask for, right?

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