Behçet’s Syndrome Community

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Nicotine and Behcet's disease

I started having symptoms of Behcet's 2 or 3 months after I stopped smoking in 2002, erythema nodosum and mouth ulcers (I started smoking in 1990, I was a big addict) ... I always thought my Behcet's is related to nicotine withdrawal ... Today, 28/02/2014, I decided on my own to start smoking again. Today, I just smoked my first cigarette in 12 years. .... because I'm at an impasse ... and I'm hoping to heal or relieve my pain .... May God forgive me ... nicotine is unlikely to be the cause and cure of this evil that is Behçet's disease .... I smoke cigarette because it's cheaper and more "practical" than patches or electronic cigarettes ....

Merci mes amis..... J'ai fumé pendant environ 7 mois l'année pas... mais je ne fume plus depuis environ 3 mois... Je suis d'Algerie. Merci. Pour le traitement, Colchicine 1mg/j et Medrol jusqu'à 32mg/j. Et pour mes vertiges ces derniers temps, je prends Betaserc et Tanganil et pour mes paresthésies et parapérisies je prends du Tegrétol 1cp/j et d'autres médicaments.

And colonic ulcers in the mouth after effects available in the article that provides non-positive. I do not smoke and do not have other symptoms in patients with Behcet after. Humira started with my brother Pancolitis diagnosis was 45 days in the hospital or have expressed an investigation in terms of doctoral behcet. Doctor continues with Humira twice a month stayed indifferent treatment.

I just tried my buddies e-cig last night. Seems to have helped the mouth ulcers, they feel better today. Think I might use it every once in a while when my mouth is painful. I've read having nicotine withdrawal syndrome can cause problems too, so I don't want to get to that point. It seems to work better on a short-term basis. Reflecting back, I used to be a smoker a few years ago, and used to complain less of problems.

robpleticha
moderator

Natural History Study at the NIH

The purpose of the study is to comprehensively evaluate patients with autoinflammatory diseases, like Behcet's syndrome, clinically, genetically and immunologically at the autoinflammatory disease clinic at the NIH.

More information:
https://clinicaltrials.gov/ct2/show/NCT000...

Angiome stellaire

Bonsoir,
Beaucoup d'entre vous,parlent de problème de peau. Avez vous des angiome stellaire? car j'en ai pas mal,et en ce moment j'en ai de plus en plus. le premier a apparu environ deux ans après mes aphtes, en haut du nez...

j'en ai aussi sur les mains,et de plus en plus dans le cou et plus bas. sa a l air d intéresser les médecin a l hôpital, pour eux j aurai un problème de foie, mais ils n ont rien trouvé , pas d hépatite, l alcool j en bois pas du tout, mais ils insistent, j ai très bien compris que mes angiomes avaient un lien avec le foie. ils ne me disent rien. je retourne a l hôpital 48 h, en juillet,pour passer un fibroscan pour mon foie.

became blind

Well I'm just diagnosed with this rare condition one month ago, The truth I have been this symptoms for around 3 years, after many visits at NI and many many to Gp never ever found realised this condition, but One month ago I lost my vision for 3 days then I went to NI and keep over there for one week, after many many tests and exams they realised I'm behest's,this moment I'm in treatment I have been twice a week at hospital for more tests, exams and control all the treatment I'm doing, I'm feeling a little better ,my vision its not a 100% but at least I didn't became blind, so I'm very new in all this of course I'm very scared about because I'm terrified to became blind any time,about my mouth ulcers, acne in all my body, infections, arthritis I'm feeling better just my eyes concerned me this moment...

behcet_spain
moderator

You're welcome of course ¡¡¡

Being tired, feeling pain in our body, could be one of our most common sympthoms. But if the intensity of this pain is very high, perhaps you'd tell your doctor.

Take care !!!!

Hugs.

Gon.

Behçet's Disease Spanish Association

Hey margaret. I lost also almost all my vision for a few days (4 or 5 days), I was like blind. I informed my doctor about it. But the difference with me is that I know that I got Behçet... For all body pain, it's normal. Vascularitis makes feel pain everywhere in your body. Don't worry too much about it, as long as you move and live correctly. Good luck margaret.. Behçet is pain all the time and everywhere, the best is to learn to live with it.

Hi amine thanks, I have this symptoms around 3 years but any doctor realised all this it's behcet's just when I lost my vision for 3 days a month over ago and was in charge at hospital for an week they realised this it's behcet's, I'm feeling better now, I'm still in high doses of steroids and another medication too,still can't eat everything but ....but my eyes it's concern me more, still i don't see well the rest I'm just learning live with it, thanks again xx

Medical marijuana for Behcet's

Anyone else find that medical marijuana helps their behcet's? I don't have to take as much prednisone or colchicine as I used to. I live in a legal area and have started using the oil for behcet's. I find the best use for me comes from eating the raw oil (as opposed to smoking it) and rubbing it on my ulcers (sometimes mixed in skin cream). I find it helps ulcers heal a lot quicker if I rub some in. Overall, my joints feel better and I seem to get a little bit of a "boost" from eating it, it just seems to help me function better. Wondering if others find it's helpful (or not helpful) for their BD.

robpleticha
moderator

Thanks so much for posting your experience.

Here are some other posts from members using medical cannabis as a treatment:
https://www.rareconnect.org/en/community/b...

https://www.rareconnect.org/en/community/b...

https://www.rareconnect.org/en/community/b...

Thanks a lot for the links! I'd like to add also that it helps my stomach when it's not acting right, again eating the oil helps more than smoking or vaping it. The sedating indica strains seem to help the best, some sativas make my heart race and cause small issues, so I tend to avoid those.

Hey. I'm Amine from Algeria. I'm 44 years old. Thanks for sharing this. I've heard that olive tree leafs are very good against mouth ulcers by chewing them. Personnally, I've never tried it but according to this person, it helps.

briser le silence

bonjour....quel bonheur de trouver cette page via net...j ai la maladie de behcet..depuis mon enfance je galérais sans que personne ne s en soucie...tous me disaient psycho somatisation...comment une enfant si vivace pourrait avoir toutes les maladies existantes!?..enfin diagnostiquée depuis 2012.a l age de 32 ans j avais soupiré..au moins j savais...
..associée à une polyarthrite confirmée aussi.
ma polyarthrite est en rémission maintenant...mais le behcet est entrain de ruiner ma vie.....
ça fait 8 mois que j ai une poussée apparemment sévère...
problèmes cutanés divers...aphtes...coliques...migraines...fatigue..dépression....et j en passe...
depuis mars j ai fait une embolie pulmonaire...ma deuxième en 2 ans....et voila..mon poumon aussi a de graves séquelles découvertes....
depuis 2 semaines...c est l enfer....ulcères géants ds ma bouche et gorge. ulcères génitaux....perte d appétit..insomnie...bref..je sens que mon corps me lâche.
et pourtant...je me lève chaque matin...et je vais au job...mais depuis 4 jours je peux plus....je me sens atterrée...
donc en cherchant à mieux comprendre...j ai atterrit ici...
malgré le traitement..devant les périodes de stress je fais ma chute libre...
vraiment...j ne sais plus quoi faire
et mes médecins...traitement de chaque symptôme à part...tout en me conseillant...accepte de vivre avec...
oh que c'est dur.....mais je garde espoir, je lis et cherche pour avancer....j ai décidé de chercher des personnes dans le même cas que moi...car mon entourage ne comprend plus mon cas..être toujours malade c"est pas facile...
je suis maman d une fillette adorable de 8 ans...c'est ma force et mon courage...
j'ai quitté son père et divorcé car il m insultait d être malade tout le temps et me battait ..mon mariage et l alcoolisme de mon mari rendaient ma vie chaotique et ma maladie avait progressé...donc je l ai quitté...divorcé ....devenue autonome...j ai cherché les causes de tous mes maux jusqu'à ce que un rhumatologiste m avait annoncé le diagnostic...qui était confirmé par mon ophtalmologiste ; ma vision était devenue floue et mes yeux tjr secs...le neurologue...psychologue..cardiologue..qui me suivait avant le diagnostic avaient confirmé....
c'était un grand bonheur et soulagement de donner un seul mot au chaos de mon corps.....
depuis...je suis passée d'une fille timide coupable de sa maladie et fragile, à une femme forte audacieuse et autonome...
la maladie est l'une des braves leçons difficiles de la vie....
souvent j'assumais...parfois je craquais comme en cet instant...
et la vie continue...
je merci de m’accueillir ici....que le bonheur et la guérison soient notre allié

Bonjour. J'ai 44 ans et j'ai été diagnostiqué Behçet à l'âge de 31ans. Depuis, ma vie a complètement changé. J'ai appris à vivre avec. Trouve toi un bon médecin. Bon courage.

Medical Marijuana and Behcet's

I was just certified to obtain cannabis for my chronic pain?

I would love to know of anyone's experience regarding this... Thank you.