Even with colchicine, my mouth ulcers would not go away. I found this. I would never endorse smoking, but my pain was more than I could bare and gave it a go. I was a non-smoker who started smoking, and still do because it works. I do not know why, but it works. I wanted to post this for anyone who may need the help as I did. I am going to try these e-cigs (nicotine only) and see if they have the same positive effect. I will definitely update when I find out. Right now, as long as smoke between 8 and 10 cigarettes a day I have zero, Dare I repeat, that is ZERO mouth ulcers. After the first cigarette I could tell a difference in pain within an hour and am going pain free going on two months now!
*NICOTINE EFFECTS on Behçet’s Disease
During periods of smoking, patients with Behçet's disease have less oral aphthae than in abstinence. To elucidate this observation, human keratinocytes and dermal microvascular endothelial cells (HMEC-1) were incubated with serum of 20 patients with Behçet's disease and 20 healthy controls for 4 hours. Maximum non-toxic concentrations were determined and the cells were further treated with 6 M nicotine, 3.3% cigarette smoke extract (CES), 100 M biochanin A, and 6.25/12.5 M pyrrolidine dithiocarbamate alone and in combinations for 24 hours. Serum IL-8 levels of patients were significantly lower than those of controls. However, after 4 hours incubation with patients' sera, IL-8 release by both cell types was markedly increased when compared with the corresponding serum levels. The levels of IL-6 and vascular endothelial growth factor (VEGF) release were after 4 hours similar with the corresponding levels in serum. IL-1 was not detected. Nicotine significantly decreased IL-8 and -6 release by HMEC-1 maintained in both patients' and controls' sera, but only IL-6 release by keratinocytes maintained in patients' sera. VEGF release by both cells was markedly increased after nicotine treatment in either serum. CES significantly decreased IL-8 release and increased production of VEGF in keratinocytes maintained in patients' serum. The phytoestrogen biochanin A alone and in combination with nicotine further decreased the secretion of IL-8, -6, and VEGF in all experimental settings. Our data support a specific anti-inflammatory effect of nicotine on keratinocytes and endothelial cells maintained in the serum of patients with Behçet's disease. Moreover, biochanin A is likely to exhibit similar and even more profound results than nicotine.
Journal of Investigative Dermatology (2007) 127, 81–89. doi:10.1038/sj.jid.5700492; published online 28 September 2006
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MMMoss21323
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I smoked from age 19 to 31, and during those years I seldom had any ulcers. I was shocked how many I got when I quit smoking.
I have been smoke free for 10 years now, and thankfully Colchicine works for me. I had read that Nicotine patches were being trialled for preventing ulcers, something that may be an alternative to lighting up.
Thank you! I did try those first. When I read the article I thought I just needed the nicotine. When that did not work, I re-read the article and noticed they said they used cigarette smoke extract, not just nicotine. So I started smoking. I am hoping the Vape works and it is just the nicotine that helps. Thank you for your advice! 🙃
While I also don’t endorse smoking (cough cough I social smoke now as I feel this is my last liberty as a person and have stopped many times due to fatigue or bronchitis etc) I have read these studies. As a scientist and a behcets person, the Scientology isn’t truly explained. I have read many studies about aphthous ulcers and aidswith smoking, which is ironically a lot like us minus the viral aspect. I can say smoking and not, one thing that has proven true for me was sugar intake(which does have many scientific studies and inflammation). If I have ulcers or bronchitis, of course I don’t smoke. I typically smoke with drinking, again slightly new as I didn’t for a long time; I don’t smoke everyday. If I ingest sugar I will for sure get ulcers within hours. Smoking and not smoking, this will happen. So as much as I appreciate your article, I won’t discredit, but will offer other aspects as variables (stress, sleep, sugar) to consider. (Side note and I know I’ve done too many parenthesis, I say stop and not quit as it was not hard to stop...health overrules all but I am open to alternative routes of stopping symptoms).
I tried the patches first. You have to buy a months worth at a time and so I tried those for a month, but with no luck. I am hoping the vape works. I was an avid 🏃🏽♀️ runner, which smoking has made too difficult. I will post if it proves helpful! 🙃
I absolutely agree! I am on an inflammatory diet, Which makes the big episodes much less severe. Sugar is a huge problem for me too, I will not even look at it, also within hours I have pain. I do have scheduled times I stop to rest as part of my stress management. That is my down time, I try not to over do it. I am a stay at home mother of three and we homeschool, so it gets a bit hectic sometimes. I am on an antidepressant (small dose) just to take that edge off. That helps control not getting too many at once. I appreciate your advise. If there is anything else I could try, I would be happy to give it a go! Thank you. 🙃
That is a hectic life. Good for you taking scheduled breaks. It’s important. The advice i usually offer is to: get plenty of sleep. Actual sleep. Drink only water. Cut all sugars. Cut all unnecessary stress. I myself have stopped my meds this past January after two years of a steady diet especially with recognizing hidden sugars. If i flare now, it’s due to poor sleep or accidental sugar ingestion. But with behcets, it’s really important to recognize early warning signs, which unfortunately you only learn as you have flares, but to then cut stressors back and to reel it in. I post all my meals on my ig @bitterbiologist. They are all sucrose free. Thanks for posting your aspect and research. Everybody really works differently and I think most are open to trying and at least learning different techniques. Stay well xoxo
That is amazing! You are an inspiration! I would love to be able to stop medication and get a handle on this myself, that is my ultimate goal. I will definitely be trying your diet. Thank you so much for all your research and effort; you have given HOPE to me and all who read your posts! 🤗
Why don’t you try a natural toothpaste. I use one by the Greenpeople.co.uk and I have no ulcers. I used to get between 25/30 at a time when they were really bad. Give it a go no side effects like smoking. I packed up smoking 25 years ago it did help my ulcer pain when I did smoke.
I have never heard or thought of a toothpaste as an aid. Very interesting! Thank you for your help. No matter what I have tried; diet, stress techniques, or rest, I cannot seem to rid myself of the ulcers. It feels so good to finally be rid of them. I will definitely get some natural toothpaste and try that. Thank you again! 🙃
I read this to my friend back when I was newly diagnosed and freaking out imagining the most severe Behçet’s possible. She said at least if i had to take up smoking I would be really cool she was joking of course. But hey if it works, it works!
Hi there. Nicotine is a prescribed medication where I live and--and is available in lozenge, inhaler and tablet form. Might be worth discussing with your Behcet's team.
Nicotine patches, sprays, lozenges , gum and fake cigarettes are prescribed all the time to help people stop smoking!!
Perhaps , if you want to try them, now that you have started smoking , you could go on one of those cessation courses done through the chemist to get them for free ( you get a choice of what you use over ten weeks)
I smoked for a long time, only 1_3 a day, but gave up in October, I did not notice more ulcers but in my last flare from April to July , the ulcers I got were really horrible and the increase in all my symptoms meant that I did drop off the wagon and have a few cigarettes, which I shamefully admitted to in my first appointment.
I have been getting far more skin lesions now, and I overheard someone say that there are patches for the skin to speed up healing that contain nicotine.
Is this true? Does anybody use them?
If so , with your comments , this disease is even crazier than I first thought , and my friends will laugh hysterically at the idea that I would be the only one between my sick chums who was told to start smoking !😂😂😂
I am fairly sure that there is also a theory that smoking also makes the soft tissue within the mouth and throat somewhat tougher and therefore harder for it to ulcerate. No idea if its true, but what i can say is that when i smoked i rarely got ulcers. I vape now as in theory vaping has far less side effects comparatively to smoking and i also rarely get ulcers now. I'm using 12mg nicotine per 1ml of vape juice. Nicotine itself has some beneficial effects on concentration / cognition see also examine.com/supplements/nic...
Please note that Behcet’s can have a negative impact on your teeth, and put you at an increased risk for blood clots. Both of these are worsened by nicotine? unfortunately. I could see using cigarettes during a flare and not inhaling, hopefully reducing some risks, but ultimately it may not be the best option. If you’re diligent about dental care and cleanings, you may dodge dental issues, but the DVT and PE risks are something that may not be worth the trade off.
I would lick dust from Mars if I thought it would help! Any and all suggestions are very much appreciated and need to be heard so that I realise the risks I have to weigh in the future Vs. the pain I have to endure now. Thank you very much for your knowledge and advise! 🙃
Believe me I’ve been there haha. The ulcers sometimes go down my throat and into my ear canals. Recently enjoyed the pleasure of my first vaginal ulcers and it would be lovely if that never happened again. I think the important thing to remember is we may not know if our large vessels are involved until something bad happens or it’s found accidentally. While checking my kidneys we found an artery that was blocked in my abdomen. There is some concern I have large vessel involvement.
I'm smoked quite a bit in my late teens / early twenties. Reflecting back my Behcets only kicked in after I quit in my early 20s. I definately noticed that smoking would alleviate the attacks of ulcers & discussed this with several doctors, they couldn't explain it. I have experimented quite a bit with nicotine patches, gum and inhalers, also e-cigs. I found nothing was effective as smoking actually cigarettes. would be interested if anyone else has any experience with this!
I stopped about 7 years ago when I thought I had mouth cancer the ulcers were that bad, all down my throat, tongue horrid etc. They improved when i started shoving my steroid skin cream down my throat and in my mouth. having realised it was not mouth cancer I started smoking a few double filter rollies a day and they pretty much eased off apart from little ones and the effects of the damage from the years of out of control attacks. Anyhows, I can't get a good ulcer that the BD Cof E will accept as proof and it was suggested that in order to get one now may the time to stop smoking again.
Outcome, I did, for a week and have a really nasty uvula that's a giant ulcer, they better accept the bloomin photos because I have been in full flair everywhere else now for 9 months. My mouth was the only bit of me holding out.
I tried to stop smoking to smoke the Nicotine Vap. The oral ulcers do not come in as many at a time (3 or 4 VS. 6 or 7) and they do may hurt as bad, but it is not as effective for me as an actual cigarette is. Next, I am going to try the natural toothpaste and see what the outcome of that is.
I went to non SLS toothpaste ages ago, the originals which are more expensive but still available at tesco and asda etc are fine. Just avoid SLS. it helps loads. I use sensdyne original. Also my gynae and derm consults have me using non soap body wash and it has also helped stop the shower burn and post water prickle skin flare. But i am years into this and badly damaged. But I only heard of BD about 4 months ago so still not diagnosed. This is all from other diagnosis for many other attempts to help plus new things through the CofE for BD.
Thank you so much for the advice! My Gynocologist prescribed me clobetasol. It is a topical steroid. It stops the valvular ulcerations right now! They start to heal immediately and no more pain when I have to got to the restroom or bathe. Have you tried that? It also helps my skin ulcerations.
I have always had 3 types of steroid creams of different strengths two with different mixes of antibiotic in them, for many years, so I have always just used them, pretty much everywhere lol I have even used some down my ear, currently down my ear in fact because my parotids are playing up and its affecting my ears I also use steroid nasal spray for pretty much all sorts of places lol My body wash is called Octenisan, its a hospital wash and it help, its very gentle but removes all bugs so don't overdo it. They use it before operations in hospitals. You only need a tiny bit and its really only if you are like me hyper reactive to pretty much everything. The Gynae prescribed a particular soap free brand because of my problem skin, think it was Dermal, but my GP ignored that lol. This seems to do the job. I also have a few others that are more expensive and not antimicrobial. But all PH balanced and soap free.
So the nicotine vap does not seem to be as effective as an actual cigarette is. I get less of them at once, and they do not feel as much like a toothache but more like an infected tastebud does. Super innoying but not rediculously painful! Next I am going to try some natural toothpaste and update how well that seems to work. 🙃 Wish me luck. 🤞🏽
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she was joking of course. But hey if it works, it works!
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