Bechetís Syndrome

132 messages in this subject.

I have suffered with mouth ulcers since I was 2(I am now 16) and when I was 11 I was diagnosed with bechetís syndrome a rare,auto-immune disorder and have since been put on medication which has improved my quality of life dramatically.Not many doctors know about bechets so I would reommend visiting an immunologist if you do not know what is causing your mouth ulcers.Good luck!
Ciara 14 August 07
Hi I am 12 and also suffered from mouth ulcers since the age of 2 and still do . I was finally diognosed with Behcets at the age of 11. I am currently taking prednisolone steroids, azathiorprine and metronidizole. I get other symptoms aswell as mouth ulcers do you ? What medication are you on or have you taken ? Who is your consult ? It would be nice to keep in touch as I have never met anyone of my kind of age group with the same condition as me as it is so rare !
Bethany 16 August 07
Hey, I got diagnosed with Behcetís last September, goodtimes, lol. Iíve been ringing the Behcetís bell here for a while trying to raise awareness. Itís amazing to me how many donít know about it and probably have it and the medical community continues to overlook it as a possability. I hope you continue to do well. There is a yahoo group for Behcetís sufferers that is really good. HTH
Kay 19 August 07
Hi Bethany the medication I take is trental,colchicine and I use a steroid mouthwash called triamcinolone acetonide which really helps.I have taken a few courses of prednisolone steroids but I only use them when my ulcers are really bad.I live in Ireland so my immunologist is called Paula OíLeary but it was a paediatrician in Hartford,Conneticut called Dr.Henry Feader who diagnosed me.
Mouth ulcers are my main symptoms but I very occassionally have problems with my eyes.I know what you mean about not knowing anyone else with bechetís.I only know one other person in Ireland who has it and heís in his twenties!
Ciara 21 August 07
Would you please describe the symptoms. Iíve been reading a lot about mouth ulcers on here, but, noone really describes what they look like.
Kathy 21 August 07
Hi Ciara, do you get other symptoms other than the mouth ulcers ? Have the symptoms got better since youíve got older ? What were your symptoms like when you were little .
Bethany 21 August 07
go to www.behcets.com it has a good list of symptoms For me things have gotten worse with age, I think most deal with that too. HTH
Kay 24 August 07
Kathy, mouth ulcers are usually a yellow colour and they look like a little crater on your lip,gum,cheek,wherever youíre unlucky enough to get them.
Bethany,I suffer with fatigue and swollen glands a lot and I used to get really high temperatures when I was younger but my symptoms have gotten better as I got older how about you?
Ciara 27 August 07
Iím sure from your symptoms that mine is something different. Itís a patch area that after I eat, it bubbles up transparent, then, the next day they are white tips and, finally, disappear til I eat bread, cookies or even corn on the cob, which Iíve eaten a lot of and, now, have that patch daily.
I went to an ENT doctor yesterday and he gave me a prescription for Kenalog (Triamcinolone) paste, which I started last night. He gave me no answer as to what this thing is...didnít seem too interested, either. Thank God, there is absolutely no pain or discomfort with what Iíve got. Good luck to you. Thanks for responding to my question.
Kathy 28 August 07
I am also Irish and just being diagnosed with Behcets, the mouth ulcers were so bad at christmas that I spent a week in hospital with them. All my life I had been constantly fobbed off by doctors saying I was stressed or run down, so it literally took until I could no longer eat or drink until I was taken seriously. I agree with Ciara, if you are suffering go and see an immunologist.
Oonagh 29 August 07
This may be an odd question, but has anyone experienced more mouth ulcers around a specific time of the year? like winter time??
shelby 7 September 07
I have had mouth sores all my life but for the past several months I have had them daily. I have been to my Dr who gave me Valtrex, nothing, then a full blood scan-nothing and to the dentist who referred me to an oral surgeon who referred me to a guy at the Univ of Penn for Oral Medicine. I go end of Oct. A routine visit to my Ob she suggested while talking to me to get tested for Behcets. My question is how do you get tested. I read the only way they test for it is my ruling everything else out. I have no other symptoms other than the mouth sores is it possible i have this disease and if so how do i get tested?
Sally 11 September 07
testing for Behcets is by ruling it out, they also can do a pathergy test where they inject a small amount of saline under the skin on your thigh and see if it ulcerates the skin in 2days. If it does that pretty much means Behcets, if it doesnít it does not rule out behcets as most donít test positive to it. I hope you get some answers it took me a lifetime of suffering and 2straight years of horrible flares back to back before I got enough symptoms to be able to get a diagnosis. I wasnít realizing how much I had going on with my overall health because my mouth hurt so bad it just took time for my docs to get a clear pictures. Best wishes!
Kay 16 September 07
kay can you have bechets with NO other symptons but mouth ulceration?
nlip 24 September 07
Sally have you just recently gotten your mouth ulcer with in the past few months? because i have done the exact same stuff as you i have just not heard about this Behcets syndrom?
Leslie 24 September 07
I was diagnosed recently, I have had really bad mouth ulcers for years. Then got genital ulcerations(amazingly painful). My GP referred me to the GUM clinic thinking it was herpes, but the nurse at the GUM said she didnít think so but to treat me as it was, then as I didnít respond to the herpes treatment and the swab came back as negative she asked the doctor for an opinion. The doctor said have you got any mouth ulcers I said yes showed them to her and she said that it would be auto-immune behcets not herpes, but I have had mouth ulcers for years.
Kylie 26 September 07
Leslie I have had mouth ulcers since i was a teenager but maybe 1 or 2 times a yr. I am now 40. About 4 months ago i got them, they went away, next month another bout, then away then July they came and never left. I have them on my tongue, gums, and soft tissue. I have 6 in total now. I met with an oral surgeon who recommended another oral surgeon at the Unniversity of Pennsylvania-I go then end of Oct and i made this apt wks ago. I just went last night to my family dr for a culture and also a urnine sample. I have blood in the urine and until a culture comes back i am taking a antibotic. Then last night my dr said i need to consider Behcetís as a strong possibility. I also have an apt with an Infectious Disease group in 2 wks. I am scared because now 2 Drís are mentioning this disease even though as far as i can tell I have no other symptoms.
Sally 27 September 07
Dear Sally (and anybody else whoís worried about Behcetís),

Try Squigle Toothpaste. You can buy it in the US--just call our toll free # 1-877-718-0718.
If youíre outside the US, please buy it from this website (visit the Mouth Ulcers Shop). SQUIGLE will probably stop or significantly reduce your mouth ulcers, if you donít have Behcetís syndrome.

If you do have Behcetís, SQUIGLE will enable you to maintain good oral hygiene while reducing oral discomfort.

Hope you get relief.

sincerely,

Dr. Edward Cutler,
Inventor of SQUIGLE Toothpaste
Narberth, PA
USA
Dr. Edward Cutler 27 September 07
For many years I only had the ulcerations and I could go months without any ulcers. It progressively got worse over the years and more symptoms added in. I dismissed many of my symptoms like joint pain and fatigue because the pain in my mouth was so intense it was what I focused on. Like Kylie, I got vaginal ulcerations and my OB diagnosed me initially. A good rhuematologist would be the way to go. I saw several before finding one that actually knew anything about Behcetís. Try and find a GOOD teaching hospital, they seem to keep up on things better. BEst wishes!
Kay 29 September 07
Hi God I hvenít used the internet in months!I was just wondering does anyone gat cellulitis with their Bechetís?Apparently it makes you more prone to getting it!Iíve gotten 3 bouts of cellulitis in 2 weeks and have been on augmentin and then flucloxacillin and penicillin for it but itís REALLY slow to clear!
Ciara 15 December 07
Dear Kay

I am wondering how long between mouth ulcers and other symptoms is the typical wait to find out if you have Bechetís. I have done all sort of testing, endiscopy, colonospy, eye exams, blood work for arthritis and nothing. Except for my family Dr all other Drís including specialist at Penn is saying maybe its just chronic ulcers. I had them continously from June till Oct and still off and on mostly off now since Oct. I use a steriod gel to get rid of any i feel might be coming on. I am just so paranoid that i canít seem to relax because i keep a watchful eye on EVERYTHING. Is it just a waiting game till next 2 symptoms come along because i am afraid i will have to suffer for months with new symptoms if i get them before i get any relief. Thanks for any input or advice

Sally 20 December 07
Iím 45 and have gotten mouth ulcers my whole life. I did test positve for herpes, but doc
does not think this is the cause. She said lots of people test positive, and donít have the symtoms
I have had in the last year. I feel achy and bad, especially in the afternoon. I have mouth ulcers
almost everyday, and keep a sore throat much of the time. I also have frequent ear aches.
My hands are tingly at times, and my finger joints have started getting stiff and very painful.
I thought I had carpel tunnel. I also have come cellulitis on my shin that I thought was a bruise,
but its been there too long. It looks like a goose egg, and goes down when I take prednisone.
I am undergoing tests to rule out other things, but my primary doctor is certain it is Behcetís.
My white blood counts are high, and also my neutriphil count is very high.
My three children have Crohnís disease.
Sue 21 December 07
Sally - The screwy thing about Behcetís is for everyone itís different. It has no pattern at all. I thankfully have no eye involvement even though that is typical and vaginal ulcers didnít show up until I was 30 even though I have suffered with Behcetís likely all my life. Iíve had ulcers as long as I can remember but it was only in fall of 2004 that they becaming so severe ongoing. I would go to a good rheumatologist and share as much information as possible. A good teaching hospital would be your best bet. Check out the www.behects.com website for a doc in yoru area that has be referred on the site by a patient with Behcets. You really have to be your own advocate because doctors donít understand the degree of torture these ulcers bring to a person. Best wishes and blesses!
Kay 29 December 07
hi, i'm 20 and have been getting mouthfuls of ulcers in the last few months, recently i also have sore's on my chin. I also have been prescribed for glasses a couple of months ago after having good eyesight all my life. my dad has bechets and reckons i could also, is it genetic?
Sharleen 7 September 08
Hi,
It's Neeraj from delhi(India) . My younger brother is suffering from bachet from last years. He is taking steroids,
cyclosporine and imuron. can anyone of you Let me know if there is any sure and certatin treatment in world for it
Neeraj 30 October 08
Hi Neeraj,- I'm Christy from TN . I'm 36 yo and have Sjogen's, probable Lupus and Bechet's. I'm now taking Plaquenil and Imuran and was on Colchicine in the past. Right now i'm having ulcers on my lower lips and upper gums. Last week had blisters on my tobgue and roof of my mouth. At the same time i get vaginal yeast infections with burning sensations. No vaginal lesions that i can see though. Steroids and Cyclosporines do no help. Steroids do help with joint pain though. Colchicine is good for mouth ulcers but may cause diarrhe.
Christy 5 November 08
hi have just discovered this site, what a relief. i thought i was the only one diagnosed with Bechets 10 yrs ago and still have flare ups. I have found it hard to discribe to family and friends so i tend to keep quiet about it. i am 68 yrs old. i find it an embarrasing subject especially vaginal ulceration, so i just try to say nothing though it is a lonely journey
mary 9 January 09
hi all, glad but not for you guys that im not alone with these ulcers, this attack i have now is one of the worst i have experienced, just paid out £17.00 on trying to get rid of them. Ambeseol which doesn't last long enough, Oralmedic that has just seen me go to space with the pain, running around the room, in so much pain, i cant imagine anything worse. Also bought some pain killers and boots Mouth Ulcer Treatment which i havent used yet. Will try the yoghurts and the stuff from holland and barret, will let you all know the outcome. With so many sufferers you think someone would come up with a cure or help for us sufferers.
alan from uk 25 January 09
I have been suffering with severe mouth ulcers for about 11 years now.
I'm originally from Scotland and suffered for many years with various medications, none of which worked. I have also suffered with the genital ulcerations (unbelievably painful!) and have been tested for both oral and genital herpes and the results have always come back negative.
During these last 11 years I have had two children and during pregnancy all signs of ulceration disappeared only for it to return, with a vengence, within months of my kids being born.
I now live in Australia and my GP here has done so much more than was ever done for me in Scotland.
Last week I finally had a gastroscopy and colonoscopy and, although I have a follow up appointment at the end of February, I've already been told that they didn't find anything during the procedure.
Behcet's has been mentioned to me on a few occasions by a few different doctors and I'm at the stage where I'm so desperate I just want a diagnosis.
I'm so sick of people telling me to use bonjela/salt water/bicarb and various other things. And I'm fed up of people thinking that I'm blowing it out of proportion and then they complain about having one mouth ulcers!
Atm I have oral ulcerations and I've suffered several episodes of genital ulcerations.
Question:- I know some symptoms can develop over time but with the symptoms I have would this be enough to diagnose Behcet's?
Paula 28 January 09
hi all, i have been suffering with sever mouth uncers and genital unceration for about 22 yrs old. Now im 24 year old. i just came to know about the bachet syndrome is just one year before. even i did intenstine sergeory too just before i came to knwo about the bechet's. im currently taking azoran therapy and every three month i go to the doctors for the lever test. becasue doctors said this medice highly effect on my lever. hey Paula does it effect during the pregnancy time too. what precaustion do you take during that period? shall i get married or not?
Zoya 24 January 09 2 February 09
i was diagnosed with bechtes 3 years ago after going threw years of pain and misdiagnoses! my son who is now 4 is having mouth ulcers and sore gums. the drs are assuming he also has it but i hate assumptions because theat why it took me 23 years to get answers. if any one can help with who i would take my young son to for some answers that would be great!

also i take a leperacy drug to supress the ulcers its called dapsone it works wonders i get very few ulcers and if i do they are hardly bad at all i have cute my steriod intake down by alot which is very good.

hope all of you wellness i know how stressfull this disease is getting information is one of the most frustrating things about it!

tammy
tammy 26 pgh pa 6 February 09
also stay far away from salt water use natural tooth paste there is a chemical in alot of tooth pastes that flare up the mouth! the disease is common in irsh heritage so that makes sense paula that you have it i would highly recommend to ask your dr to start treating you for it! i was mis diagnosed with herpes casue of my age but now they have taken me serious after years of suffering!
tammy 26 pgh pa 6 February 09
Hello. My 11 yr old daughter was diagnosed about a yr ago with Bechet's. She suffers from chronic painful mouth and throat ulcers. She also will suffer from fatigue, painful joints, and swollen sore lymph nodes, as well as urinary tract problems during her flare-ups. When she has the mouth ulcers she will always have UTI symptoms with it, such as, burning with urination, blood and protien in her urine. She takes colchicine which really helps keep her flare-ups down.
Lisa 19 February 09
Hello-This is Christy from TN. I am now having oral ulcers like every 2 months along with joint pain/stiffness, increased heart palpitations (PVC's), fatigue and irritabilty. Sometimes it feels like I can't take anymore but then the cycle stops for a few weeks. How does everyone deal during the rough times when they are so frequent. No one else has a clue what we go through physically or mentally. I'm on Imuran, Plaquenil, Cardizem CD, Topamax, Welbutrin, Pilocarpine. I have Bechet's, Sjogren's and ? Lupus.
Christy 28 February 09
howdy to all-I am a 35 year old mum of 2 children who only found out i have bechets. It only took 14 years to diagnose and many sick days which eventually lead to a stroke! i also carry the dreaded herpes virus which in many ways is similar to herpes. i find famcylovir is the best. with the herpes it took i would say up to 40 swabs for it to show. i also had colonoscopy 3 years ago showing ulceration in the bowel...which the doctor described like a cigarette burn. i get serious pain and stiffness in the back of my head/neck which eventually seemed that swollen oneday i was rubbing it and went to get out of my car and had a minor stroke. my question is still is it herpes or bechets??both are very sore and not pleasant and both can give off meningitis systems??head up and i hope oneday they can find a cure for both:)
natasha 5 March 09
hi im 27 and have just been told i have bechets syndrome. im just wondering does it get any way better with the medication. i cant belive there are so many other people with it,iwas told it so rare to get in ireland.
karen 6 March 09
Hi i'm 12 and i have one very small ulcer on my tounge and it recks badly. Although it's only small it's really pain full. It's only the size of 1/2 taste buds (a couple of needle heads). I've been reading this convo and there is a couple of questions i'd like to ask
1) What is bechets?
2) could i have it?
3) how do i find out if i have it?
Flozz 15 March 09
Hey ! Christy here. I'm having ulcers on my tongue, lip, and gums all the time now and my glands swell every tme I eat and they stay tender. I stay hoarse all the time and cough alot. Feels miserable. Everyone just tells me, oh well, I guess you just have to live with it. I'm really sick of hearing that !!!! I had a couple of lesions on my face 2 weeks ago that we assume were Behcet's lesions. Does this ever end ?
Christy 23 March 09
im 25 from England and a male, me and my sister have both got bechetts, we was diagnosed 15 years ago, i get mouth ulcers all the time and my eyes are red slot, i here people get swollen glands alot, where about are these swollen glands? and what does the doctor said, i work full time and have a 1 yr old son, i get very tired alot and bin thinkin about givin up work for a few years, but what help would i get?
wayne, blackpool, england 2 April 09
My gland that swells is the right submandibular gland (sorry, I'm a nurse :) That's the gland under the right jaw. As for the fatige, I thought I just couldn't take it anymore until my pulmonologist started me on Welbutrin 100 mg twice daily. He did not give me this for depression but to work as a stimulant. It HAS helped tremendously. I use Restasis eye drops for my eyes. They are not so bad during the winter. The sun in the summer is torture though (I also have Sjogren's). How old is your sister ? Do her symptoms worsen prior to her period (sorry)?
Christy-From Tennessee, USA 4 April 09
Hi everyone! I've suffered from mouth ulcers since i was a baby(I was 3 months old when i got my first mouth ulcer my mom says). Now, i'm 18 and still suffering from them. I used to get mouth ulcers every one month or they sometimes disappeared for a few months but i'm with mouth ulcers since 2 months now. I've just seen a rheumathologist who says maybe its the bechet syndrome. apart from mouth ulcers i have joint problems but no genital ulcerations. is it possible for me to have the bechet syndrome?
Jo18 10 April 09
Hi Jo ! I have bechet's and Sjogren's. I do not have vaginal lesions nor do I have uveitis associated with Bechet's. I have had erythema nodosum and other skin lesions. Many, many oral ulcers and severe joint pain. My eyes stay dry and very irritated especially during the summer months. My rheumatologist calls my Bechet's incomplete Bechet's because of no uveitis. I do get vaginal yeast infections associated with most bad outbreaks of oral ulcers. Any vaginal symptoms along with the other symptoms tends to be related to Bechet's. Google incomplete Bechet's and this may help give you some answers. Not everyone is the same nor is every disease identical, especially autoimmune diseases ! Good Luck.
Christy-TN 16 April 09
Hi everyone. I'm 43 and have been plagued for the past 15 years with mysterious pains and aches. I have been diagnosed with everything from IBS to Celiac to Acid refluc to MS to having surgeries to remove body parts that they were sure we're causing my problems and I'm sure now didn't have to remove. 3 weeks ago they diagnosed me with Bechets based on history, very painful mouth ulcers (which for years doctors told me wasn't important), joint pains, stomach pains, skin rashes, speech problems, tiredness, etc. I'm taking 4 different medicines and even though I'm feeling better than I have in years, I'm having a hard time adjusting to the ups/downs of the medications and trying to cope with the diagnosis. I'm not sure right now if my ups/downs are all the medicine or the Bechets but getting through the day right now is really tough. Have any of you ever experienced numbness in your face that lasts for long periods of time? For those of you that have had this diagnosis for a while, are there any suggestions you can share on things that work for all of you? Words of wisdom?
Trish - Texas 16 April 09
Sounds like you may be having episodes of trigeminal neuralgia which sometimes goes along with autoimmune diseases (i'm a nurse and work for a neurologist).
Christy-TN 19 April 09
Thanks Christy! The past few years have been an adventure. Not one I'd wish on anyone. I'm now taking a medicine for the numbness in my face and it seems to be helping a bit.
Trish - Texas 26 April 09
i had behets 18 years the ulcers where verry painfull so lot of sm 33 anestetics etc I wend to chinese herbelist gave me halve the garden to boil up stoped the ulcer deat in the track
wolfgang perth ausralia 11 May 09
Have any of you tried a gluten free diet?
Amanda 11 May 09
i am wanting to get tested for bechets thu i only get bad mouth ulcers and when i get the ulcers i feel like i have a mild flu. i get temperature glands swollen, and i feel like hell with bad aches and pains in my back and hips and knees arms legs all over joints and muscles i guess.

i dont have genital ulcers or eye problems so i dont thnk the doc will listen but i cant go on like this!
fed up 12 May 09
Actually, I've found doctors quite willing to slap the diagnosis of behcets on people. Do a lot of research, print it out, take it to the doctor and make your case of why he should refer you for further testing, or to a rheumatologist. It's your life, don't let a doctor stand in the way.
Sun 13 May 09
Hi:
I am fairly new to this game. I have a diagnosis of probable Behcet's. I have oral ulcers with fissuring and genital lesions that are not frank ulcers with fissuring. I also have fissuring at perineum. My eye gets some fissuring but no evidence of uveitis (thank God). I am wondering if I have something else other than Behcet's such as sjorgens syndrome which is also autoimmune and or who knows what. I can tolerate everything but the vaginal area is not very tolerable. My docs don't seem to understand how debilitating the vaginal issues are and given it is not "life threatening" not urgent to them. I am in Massachusetts and if anyone knows of a kind doctor in this area with expertise in Behcet's that would be helpful.
Best to everyone!!!
Elisa
Elisa 14 May 09
well my doctor first said no she didnt think i had it as the symptoms are VERY bad and mine are not. That they symptoms are disabling and mine are not! I had just told her that i feel sick and achy when i get the ulcers but it didnt seem to sink in!
She said I seemed agitated or something she didnt understand that i am fed up with feeling sick with these mouth ulcers. Its like talking to a brick wall.
She said she thinks it is psychosomatic and bought up how i had a psychatric appointment with someone else.....
I said even thu i need to see a counsellor it does not mean i am making this stuff up or that it does not have a psychical cause.

I am so sick of feeling sick and achy. ACHES AND PAINS AND FEELING SORE ALL OVER WHENEVER I GET THE ULCERS. I am so tired of doctors not beleiving me.
fed up 15 May 09
Hi everyone ! I have "probable" Behcet's and Sjogren's. I get vaginal yeast infections with almost every outbreak of oral ulcers. I too feel like crap with these ulcers. You just ache all over and geenrally feel bad- like having the flu. My personality changes and my memory goes out the window. I have cognitive difficulties-like not being able to figure out how to work a disk drive or putting sugar in the coffe maker instead of coffee. Once the flare is over, I am back to myself. Noone really understands, not even the neurologist I work for. This whole thing is very scary, but it is comforting to know that others have the same experiences. You do feel worse physically when the ulcers are present. Just be persistant and stand your ground and remember that there are more doctors out there. Find a good rheumatologist who is well educated, who listens and treats you and not lab results.
Christy, TN 17 May 09
Hello everyone, I just turned 32 and stared getting mouth ulcers in November of 08. Its been 7 months and I have has at least four bad break outs. I am in one now. I went to the doctor for the third time Friday. Its sound like everyones story. This time I also received the Ulcers down stairs. For some reason I also get a terrible yeast infections every time also.Of course the blood test has came back Negative for any STDs. I go this week to a Infectious Disease doctor, my Ob and Family doctor think I have Bechets. I can't beleive I never heard of this until now. I googled it and found all of you that suffer like I have been. Makes me fell a little better knowing I AM NOT GOING NUTS.. thanks
Dalton, IN 18 May 09
Hi I have had ulcers since I was a young toddler and I am now 37 and I am getting really really really fed up with my mouth ulcers! I have tried everything! Reading these blogs i wonder whether I have Bechet's.....is it possible to have this with only the ulcers being the symptom! If I get one ulcer then I will generally get 4 - 6 of them within days, I am currently having my 3rd recent set of ulcers (in 3 months), they last 2 - 3 weeks I get about 10 days break and bobs your uncle they flare up again! I get swollen glands and my mouth feels sometimes like it has needles being pushed into the gums (a prickly sensation), I get really thirsty and very tired and run down! (Oh I do get wind, swollen stomach and am quite dischargy at times, sorry for the male readers!) Need I say anymore? Does this sound like Bechet's? I wondered if someone could let me know before I go and have a battle with my doctor!
Thanks!
Vicky 18 May 09
Hi Vicky,
I too have been suffereing from recurrant mouth ulcers since I was seven and I'm now 26. I can safely say that I have them constantly in my mouth . At the moment I have 5! Like you, ulcers and tiredness are my only symptoms, but I am tired of being told by the doctor its 'just one of those things'. I think I am going to suggeset it too my doctor.
Michelle 26 19 May 09
Vicky, Michelle - I just received better news then Bechets. Its Dalton, You need to go to a dermitoligist... I just went yesterday and if you read above I have Ulcers and other symptoms. I just found out after years of Ulcers I have "Lichen Planus" . Google it! I received two steroid shotts in my butt and this moring I wake up and the Ulcers are almost gone!!!!!!!!!!! Call your Doctor!!! Good Luck
Dalton,32 IN 19 May 09
Vicky , Michelle This is dalton from IN. I just went to a dermitoligist apt yesterday. I do not have Bechets I have Lichen Planus. Please have you doctor send you to a dermitoligist..... I receive two steroid shotts and this morning they are almost all gone. Good luck..
Dalton, IN 20 May 09
Don't be deceived. Steroids are the treatment for almost everything. Lichen planus oral lesions look different than Sjogren's or Behcet's lesions. A good website for pics to view is dermatlas.com. Lichen planus is an autoimmune disease and all autoimmune diseases present with generally the same symptoms of fatigue and malaise.
Christy, TN 24 May 09
I have always suffered from mouth ulcers and since finding out I was pregnant (now 6 months) I have suffered from very painful genital ulcers. I may have Behchets - but this is yet to be confirmed. I can't believe all you people have had simliar symptoms, I was feeling so alone.
Michelle 26 May 09
i have had a few doctors believe i have bechets though the doctors will not diagnose one doctor said i had bechets thats where i learned of this disease i have ulsers mouth legs few other places i have a unexplained high white blood cell count unexplained eyes severe arthritus arms dont go straight inflamation had biopsy in my mouth unexplained doctors just dont know and a few more add and end symptoms hmmm best explained a painful roller coaster ride that have to deal with ime convinced i have bechets so many symtoms and no answers hey the wbc and ulcer arthritus so forth anyways some thoughts anyone can help me my email is cnccert@yahoo.com thanks
jan 26 May 09
hi! im michelle,20, from northern ireland.since a child i have had mouth ulcers frequently,and recently i have had two bouts of unbelievebly painful and exhausting vaginal ulcerations which make it virtualy impossible to walk,and most definately impossible to pass urine. iv tested negative for herpes twice,also am gettin arthritic like pains in my knees which swell up at the least bit of walking, am running a fever and have been hospitalised with very high white blood cell count and infection. I currently have my whole mouth covered in ulcers.the doctors all say they suspect behcets,but none of them actually seem to know what to do about it.i have been prescribed no medication so far and am living in fear of the next episode because it exhausted me so completely physically and mentally. Could anyone recommend a doctor in ireland who actualy knows about and treats behcets?im quite desperate at this stage!
Michelle,N.Ireland 20 July 09
Good luck Michelle. It definitely sounds like you have Bechet's. You should be on Imuran at the least. Find a good rheumatologist.
Christy, TN, USA 7 August 09
Hi Christy
Re swollen gland, this morning I woke up with my right gland at side of jaw swollen up, is this the same symptom you have or could it be from using Oraldine for a very sore ulcer on the inside cheek of right hand side, my face looks bigger at one side today and wonder what to do before visiting the doctor.
Much obliged for any one out there to advise.
Liz
Liz 16 August 09
Liz,
Usually my swollen glands come after eating or drinking. The gland is extremely painful. It goes down a short time after. It's due to an extremely dry mouth and a blocked salivary gland. I usually use Lidocaine on my bad ulcers. You kind of just get used to them though.
Christy 23 August 09
Hi Im Carlos Turcios Frome Las Vegas Nevada and I have suffererd bechet syndrome six years ago but Dr just diagnoss but I have to hade a struck I was tree days i coma 17 days Hospitalize but all this six years I have been
loocking for medical help but there are not many Drs know abur bechets thesy confused with herpes becuuse took to long to diagnose my symthoms are severe like my joint and my vision and mounth ulcers are really painfull
but I have to be on prednisone colchicine but this it is not enough Im 40 years old and my dougter is 17 and she just have daignose with bechet olso Im glad that I find you here couse I THINK Drs can see the many people with the syndrtome they my work specialy on these
Carlos Mario TUrcios 26 August 09
Hey Carlos,
You need to be started on Imuran. At one time I was on Plaquenil, Cochicine and Imuran but it is the Imuran alone that really helps control me the most. But of course everyone will be different but Imuran is a must have for Behcet's. God bless you and your daughter.
Christy, TN 1 September 09
Hi just wondering if any one can help, my dad has had mouth ulcers for 2 years now with them not disappearing, he has all types of sores in his mouth, white patches, his tongue is very red with patches on it and his lips top and bottom are full of blisters, he also has burning sensations constantly, he cannot eat solid food anymore, everything has to be pureed, even drinking water is painful for him, today he noticed the same sores on his genitals and now we are really worried as doctors have not been able to find what this is please can anyone help
Martine 1 September 09
Sounds like could be Behcet's. But strange tat the ulcers do not go away at all but the genital ulcers fit along. Does he have joint pain and fatigue also ?
Christy, TN 2 September 09
Hi. Im 20 years old and from Denmark. I have had mouth ulclers for 4 years now, without any periods without them. i have been diagnoced with bechets for 2 years now. eventhough my medicin is reducing the other symptoms, the mouth ulclers is staying. they are big and very painfull, they are placed in the back of my troath, and they are deforming my throat . the throat doesnt look human anymore, and i have just gained an operation to cut my air way to my nose free. isnt there anything to do about it. im really suffering. !!? i nearly cant eat, cant swallow my spit , and having problems drinking... help me please...
Jacob 30 September 09
There are a range of drugs your doctors should be trailing on you - I assume you're already taking colchicine. Dapsone, Interferon alfa, solondo and a range of other drugs have shown to have good effects for severe mouth ulcers, both related to Bechets or not. Thalidomide is the most toxic yet most effective drug for severe mouth ulcers. You should talk to your doctors about trying it. Because your case is so severe, I think the benefits would outweigh the risks. Do lots of research to help your doctors find a solution. You may be suffering unnecessarily as there are many drugs out there that should have some effect.
TC 1 October 09
Hi. I am now 71 years old from Dartford Kent UK. I was diagnosed as having Behcets about 30 years ago but apparently had been suffering the individual symptoms for many years. Worse case scenario was that my entire body ws affected at one stage. This was in the early 1980's and many many different medications were prescribed. They worked for a short while then the Dr's tried something else until as a more or less last resort I was put on steroids. Cant even take those now. So when its bad I rely on pain killers. The mouth ulcers I eased by sucking disprin and spitting it out. I did this just before eating. But the best thing was Detol mouthwash which when used as a regular mouthwash was diluted. I used it neat on the mouth ulcers. WOW talk about running up walls, it was a bit extreme but it worked. It used to "burn them out" after 4 or 5 days. Unfortunately this is no longer on the market. I did contact Detol and spoke to one of their research guys explaining the situation but sadly they had no plans to bring it back on the market. Never did find anything as good as that. As far as other symptoms are concerned, I have quite a few but never mind, it could be worse. You all keep well.
Gordon. Dartford. October 6th 2009
Gordon Tickner. 41, DA1 5EW Dartford. Kent. UK 6 October 09
God bless you Gordon.
Christy, TN, USA 10 October 09
I have hurting in my vaginal area and yellow soer in mouth does anyone know whats wrong with me im scared
Lisa 11 October 09
Behcets diagnosis 2 years ago - and its been a miserable road of pain and humiliation, being unable to speak for long periods, fatigue, catching everything going and boxes & boxes of painkillers during a flare-up.

I'm trying a new eating plan as there is anecdotal evidence that it helps auto-immune disease - "Eat Right for your Blood Type". I'm not endorsing it, only started it a month ago but the ulceration has calmed down noticeably.
Good luck - you're not alone.
Ellie, 36, London. 15 October 09
I think I have Behcets- please help!!!

Here is my reasoning:
I have had chronic canker sores since the age of 5, with extreme outbreaks (3-7 sores at a time) in my teens.
I have outbreak-related fatigue.
I was misdiagnosed with an allergy to citric acid at age 6.
I have had abnormal joint stiffness and popping since age 7.
My neutraphil count is abnormally high (I tested negative at age 18 for major AI diseases: HIV, Lupus, Celiacs, Crohns, Ulcerative Colitis, etc)
I was misdiagnosed with Herpes (with no blood test) at age 20, took Famvir and it did not help my outbreaks.
I was misdiagnosed with anxiety at age 22, took Celexa and it did help either.
My mother is Irish (second generation), and has Ulcerative Colitis (similar to Crohns Disease).

At this point, I am not too trusting of my physician's opinion and I am desperately trying to get a real answer.

So here are my questions, since I know very little about Behcets:
Given my history, does it sound like I could have Behcets?
Are chronic sores, joint stiffness and fatigue sometimes the only symptoms?
Is there a test for it?
How do I convince my physician that I need to be tested?


Beth, 25, California 26 October 09
Hi everyone, this is Christy. Last Tuesday I woke up with an outbreak of erythema nodosum and my top lip was extremely painful and numb at the same time. Just so happens I had an appt with my rheum. that day. He started me back on Cochcine. Held off on Prednisone because I have a bad yeast and bacterial vaginal infection (sorry guys). But I knew what was about to happen. By Saturday, my mouth was full of lesions. My tongue on the top, bottom and side covered with ulcers and blister-like lesions. The roof and floor of my mouth, my top and bottom lips are covered with ulcers and many large blisters. I've hardly eaten in days. Thank God for Viscous Lidocaine or I couldn't stand the pain. Rheumatologist did start Prednisone today but only because he didnt know what else to do. Prednisone never works for the lesions. I've found they just have to run their course. Any other experience for anyone ? OK, I'll quit complaining now : ) I'm just so frustrated because I have not had an outbreak this bad in 1 1/2 years. Thought I was doing pretty ok : (
Christy TN 3 November 09
There is a doctor at NY hospital Yusif Yuzici.....He is awesome...knows alot about Bechets...His Dad is a Bechets Doctor in Turkey...He helped me with meds.
Dutchess 11 November 09
Bear in mind that Behcet's only affects around 1 in 100,000 people in the UK - to be diagnosed you have to have mouth ulcers + one other of the main symptoms (genital sores, skin lesions, inflamed eyes etc). You can be diagnosed with "suspected" Behcet's if you just have ulcers and no other symptoms.

The treatment can be similar to that of Inflammatory Bowel Disorders such as Ulcerative Colitis (infliximab etc). These are biologicals that try to combat over active immune response.

If you think you have this, please visit your Dr and take a list of evidence to support your fight!
Kate 12 November 09
i was a guinea pig for years was diagnosed at a young age with behcets.. well im only 20 now but still. lol i dont have insurance so i have to deal with the pain and all but when i was on medicine it did seem to help i didnt have any symptoms for about a couple years.
Ang 7 January 10
hi.. I have numerous sores atfter broken skin which causes septacemia, toxic shock and massive infections, 3 - 6 mouth ulcers once a month a cold(canker) sore about every 3 months, suffer with cellulitis, Phlebitis, numerous blood clots, Irritable bowel and bladder syndrome, dry, red inflammed eye which the optometerist doesnt know what it is... I went to a doc a week ago and he reckons maybe bechets anyone else have my symptoms and been diagnosed. THis only started after a massive infection and organ shut down 6 years ago, although I have suffered mouth ulcers all my life.
Beth UK 11 February 10
definitely sounds like this could be bechet's Beth, and the sequela that goes alng with it. You need to see a GOOD rheumatologist
Christy TN USA 16 February 10
Beth, u need Imuran AND Colchicine
Christy TN USA 16 February 10
When people say problems with their eyes, what sort of problems are they?
Ann-Marie 21 February 10
I have at least 40 sores in my mouth right now; they are on the inside of my cheeks, the floor of my mouth, sides and bottom of my tongue. Prednisone has made them disappear quickly but they come right back when the medication is done. I have not other symptom's of Behcet's but fear I may have it. I have had canker sores all my life but these tremendous outbreaks have been non stop for 5 months now. I am on colcicine right now and it is doing nothing. Do you think this could be Behcet's?
mike usa 28 February 10
Hi all, very informative to read all your comments. I have suffered with mouth ulcers since childhood, but 18 months ago they stepped up a level and went from 2-3 ulcers a month (bearable) to constant, as soon as they go more appear and at present I have 6, I find the tongue one's and lip area most painful. Just wanted to ask can someone please tell me why a good rheumatologist is important if the cause is Bachets?
Barbara Mead 1 March 10
hello im 20 years i have bachets for over six years...i always get mouth ulcers its very painful very hard to eat anything or brush my teeths. specaily its very painful in the morning.im on colchicine and prednisone right now. alot of times i have fever chills n caughing alot n hard time breathing.all my joins are hurting sometimes...hot shower and exercises realy help...
joe 15 March 10
Behcet's is an autoimmune disease and that is what rheumatologists treat. Usually, when you have one autoimmune problem you probably have at least one other like Sjogren's or rheumatoid. A combination of Plaquenil and Imuran have helped my mouth ulcers not be as frequent or as severe most of the time. And Mike, when I get large amounts of ulcers like you, nothing helps. They just have to run the course and I stay miserable for 1-2 weeks. I still have really bad joint pain. My eyes stay extremely dry and burn even with Restasis but I haven't had another corneal abrasion in several months. My airways get dry from Sjogren's and I too cough alot but not as much since my Imuran has really kicked in (after over a year). Good luck to everyone and keep up the fight and know that there are other people w feel like you. Sometimes I find that is the hardest part, people not understanding !!!
Christy, TN 22 March 10
yea i exactly feel the same way.but i have a question for u. for how long do you have this disease? if u dont mind to answer my question please... thanks Christy
joe 27 March 10
i was diagnosed with bechets in 1993 after losing sight in one eye and all diff types of aches and pains it has finally burned itself out i still suffer from mouth ulcers which the doc reckons will be forever and dont know if the bechets will come back or stay away i just wish i could find a cure for the ulcers as i have had them constantly for the past 2 year with no respite i will definitely try some of the sugestions on here with my fingers crossed
rose wilson 30 March 10
I was diagnosed with Bechet's and Sjogren's and probale SLE about 3 years ago now I guess. I seem to be going through a flare now with really bad joint pain starting last weak and muscle fatigue, shortness of breath and punched out lesions on my tongue occurring today. My opthamologist is recommending sclera lenses as a last resort for my eyes because of sjogren's and dry eyes. Cost from $3,000-$7,000. She said insurance may not cover (yay me !) I have an appointment with my rheumatologist in Nashville Tuesday. I usually refuse Prednisone (nurses make BAD patients) but I think this time I might accept !!! Should I go on some other immunosupressant other than Imuran and Colchicine that could potentially be more harmful in the years to come or just deal with the pain until the next flare, I'll probably opt for the latter which really annoys my physicians : ).

Christy, TN 11 April 10
I was diagnosed with Bechet's and Sjogren's and probale SLE about 3 years ago now I guess. I seem to be going through a flare now with really bad joint pain starting last weak and muscle fatigue, shortness of breath and punched out lesions on my tongue occurring today. My opthamologist is recommending sclera lenses as a last resort for my eyes because of sjogren's and dry eyes. Cost from $3,000-$7,000. She said insurance may not cover (yay me !) I have an appointment with my rheumatologist in Nashville Tuesday. I usually refuse Prednisone (nurses make BAD patients) but I think this time I might accept !!! Should I go on some other immunosupressant other than Imuran and Colchicine that could potentially be more harmful in the years to come or just deal with the pain until the next flare, I'll probably opt for the latter which really annoys my physicians : ).

Christy, TN 11 April 10
Duchess, I am so sorry I meant to thank you for the info about Dr Yusuf Yazici in New York. I e-mailed him and he sent me articles from he and his father who is a leading researcher on Bechet's in Turkey. He must be a very nice physician to have taken the time to have sent me so many publications. If anyone is in New York, you need to try to see this doctor for Bechet's !!!
Christy, TN 11 April 10
hi all, thanks heaps for your information. im going to go to my doctor and get tested. for many years ive suffered with dry, red, itchy eyes, ive had mouth ulcers for the past 3 years that come and go constantly in the same spot, and i also suffer from bouts of fatigue, swollen glands and achey feelings. i think you guys may have given me an answer for my problems. I know behcets can cause eye problems so does this include dry, itchy, red eyes? and do you find the ulcers occur in the same spots?
Hayley 11 April 10
hello yes eyes can become red dry and blurry my tongue ulcers are usually in the same places i usually have a great deal of neck pain familar to anyone else? as well i can count on extended time in the bathroom when all this gets kicked up a memory nightmare cocentration issues does this sound familiar?cheryl
cheryl 11 April 10
Hi Cheryl, I am also suffering from neck pain and stiffness and have been finding it hard to concentrate. Have you been diagonised with behcets? and thank you for your feedback :)
Hayley 11 April 10
I was recently diagnosed with Bechet Syndrome. I suffer from a lot of the same symptoms that you all have mentioned. I don't share a lot about how I am feeling with other people because I don't want to seem like I am complaining all the time...after all, there are a lot of people who are in far worse shape than myself! I would like to be able to talk with others that have this syndrome. I live in Southeast Georgia. Are there any other people with this syndrome in Southeast Georgia or Georgia??????
D'Lease 13 April 10
I HOPE SOMEONE WILL FIND A CURE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Darlene 22 May 10
Yes!! Gluten free diet! Whenever I eat gluten, an hour later i get the blisters again that then turn into ulcers. When I eat healthy and avoid gluten, My skin clears up and my outbreaks disappear. It is worth the try!! Also, try homeopathy, many people with chronic diseases have been cured with homeopathy.
SSS 8 June 10
Hi everyone. I REALLY pray there will be a cure for this disease. >My cousins lovely daughter have had mouth ulcers for years, now she is ten, and the docters think it is behcet but here in Denmark it is so rare and they have tried prednisone I know, with periods where she got better, but now they dont know to do anymore. It does not help:( i will tell my cousin about this page, maybe she could have the mail to this doctor in New York please???

***********************

Thanks anyway for I now know a lot more about here disease.
Janie
Janie, Denmark 6 July 10
Wow. So glad I found you guys. I was recently diagnosed with Bechet's after 28 gruling years of mis-diagnosises and doctors tests. I have very high white blood cell counts for no reason. I have mouth ulcers, up to 10 at a time that can get to be the size of nickels. I can numerous UTIs and vaginal infections with NO genital ulcers (thank god). I have total body aches when I have the severe outbreaks and have had fever with the mouth ulcers. My glands get very swollen as well. I am too young ot be on immune surpressors and they scare the shite out of me. Therefore, I take prescription pain meds just so I can eat and sleep. The only relief I found was when I was pregnant. My immune system was lowered to normal stages and I didnt have a mouth ulcer for 9 months (in 28 years of life). Please feel free to email me for support or any questions. fallonfranklin@yahoo.com I have tried EVERYTHING but the immune suppressors. I seriously had no idea that people were in as much misery as I am until reading this site. When you go to a "mouth ulcer study" and the doctor brings the other nurses in to look at your mouth and says "you are the worst I have ever seen"....you are in good company with me...ha
fallon 13 July 10
hi every one,found out one yearago that i have the dreaded bechets after loosing the sight in my right eye,since then i have had temp loss in my left eye.since being on pred all ulcers have gone,still suffer with joint pain,tiredness.as you all can appreciate it can be very stressful for both patient and family members.very few people understand what we are all going through,most of my family think im just lazy.its even affected my marriage,i just try to live every day as if its my last ,do all the things that i like doing,good luck to all,hope a cure is not faraway,enjoy life try to be happy????????
stevie d 40.18 july 10 18 August 10
Hi everyone, it is so good to be able to talk to people who are going through the same thing and understand! A big shoutout to all the caregivers and husbands out there who have to live with all of us miserable Behcet sufferers! I live in Oklahoma, am primarily of scots decent with some cherrokee. I was origionally diagnosed with B.D by a great rhuemetoligist from Egypt and then when sent to the Mayo during a non flare they discounted it, told me the whole thing was in my head and sent my home. It has been eight years of hell and now that I am 28 I am a text book example of severe Behcet's. I have the ulcerations which occur every three weeks to last for 3 weeks which spread from throat to tongue, cheeks, ect.. then they spread through stomach, colon, genetelia, and rectum. I get the sores on my arms, fingers, stomach, and legs, I get the extremely painful areas on my scalp when the flare begins, vasculitis, and severe pain in joints and fatigue. I am the mother of two boys (one 5 and the other 2) I have had seven misscarriages and terrible pregnancies with my Behcet's which I barely surrvived. My boys are truly miracles and I am so grateful that I got to keep them. Now I am having terrible problems with the colon and have been told that my last choice now is to have complete colonectomy with illeostomy. My rhuem is freaking out and saying that that would be a death sentence because as you all know B.D comes with lots and lots of infections each flare, and illeostomy is an open wound for the rest of your life....ergo...very dangerous with a condition like Behcet's. Throughout all of this I have tried to stay happy and take time to enjoy my children, motherhood, and smell the roses so to speak, and count my many many blessings. To all of you who have this disease. I understand what you are going through, wish you the best and am here if you ever want to talk. Also, because the ulcers are so painful I have made my own natural oils and creams which relieve the pain and heal the ulcers faster. Great too for the painful facial sores courtesy of B.D I have also learned how to make my own makeup which is antibacterial and clears my skin up-and makes me look and feel a whole lot better. If you need a sounding board for your B.D issues my email is Jen@jenuinebeauty.com, website is the same www.jenuinebeauty.com
Jenny 16 September 10
Hi there everyone,

Just been clinically diagnosed with B.D. about 2 months ago. I have had mouth ulcers for about 12 years. Always been tired and sore muscles, bad joints since the age of 17. One year ago my vision in my left eye started to blurr, within 3 weeks I went from 20/20 in my left eye to 20/70 and it has gotten as bad as 20/120. I have had vasculitis surgery in May of this year with no success. Around the same time I had very bad vaginal sores. I have been tested to just about everything under the sun including MS. I have been unable to work for the past year. I also get numbness all over my body, sometimes the whole one side of my body, it can last min. or sometimes days. I also have speech problems (know what I want to say but it comes out all mixed up) I am now on Azathioprine, prednisone, Actonel and pantoprazole. I have gained about 30 to 35lbs and my stomache looks like i am pregnant (I am not!!) the drugs have helped all to the other symptoms to some degree but have created new symptoms to deal with. Not sure which is worse at this point. Still hoping the side affects of the drugs calm down as my body accepts them better. I forgot to mention i also get sores all over my body (pustuals) they range in size and severity but generally are very sore and hot to touch. I have also found out that I have a branin anurisym and an ovarian cyst. It has been a hellish year for myself and my family, and I still don't have all the answers about how this will affect the rest of my and my families life. I try to stay on the sunny side of everything, (having thought I could have MS at one point) I can still function for the most part normally. Does anyone else have all to these symptoms with their B.D. diagnosis?
Tracey, Onatiro, Canada Sept 21/10 21 September 10
hi

i have suffered for 5years after a stressful pregnancy with mouth and genital ulcers, outbreaks of 4 or 5 at a time, and i am rarely without them, i have a permanent headache and an achey pain in my neck and at the top of my legs. i also have nausea and floaters in my vision. Strangely i have very itchy shins??? I have been tols i am just depressed but know instanctively this is not the case. Does anyone think i may have Behcets? i asked my doctor but he had never heard of it and seems to think i am just a hyperchondriac. Does anyone know how i could go about getting a medical professional to see me who would know about this syndrome? I live in the North West of England. Thank you CAroline
caroline 28 November 10
i have dry eyes as well forgot to say
caroline w 28 November 10
can i get behcets if my father has had it his whole life, i do have a few symptoms except for mouth sores.
chels 6 December 10
Hi everyone. Gordon here from 41, DA1 5EW Dartford Kent UK. Thanks Christy from TN. Hope things are getting better for you. Hope things are getting better for everyone. Strange, I added my comment on 6th Oct 2009, then forgot the name of the site. It was only today when I was looking at Kent weather forecast that the words Behcets Syndrome hit me, and I saw your message Christy. The various symptoms that I have which are associated with Behcets, have been remarkably quite and behaving themselves over tha past couple of years. Had to have a hip replacement a while back as I fell and broke it. Also the steroids that were pumped into me years ago appear to have weakened my bones. Never mind tho, things could be much worse. Keep happy everyone, and dont let the symptoms get you down. Think I should write the name of this site down. Keep well and keep safe everyone.
Gordon Tickner. 41, DA1 5EW Dartford Kent UK 13 February 11
To chels 6 December 10. Hi there. your question also worried me as I have 3 children, all fairly young when Behcets was first diagnosed. If my specialst was right, you do not have to worry as I was told that Behcets is not hereditry.
Keep safe and keep well everybody. Gordon. 41, DA1 5EW Dartford Kent UK
Gordon Tickner. 41, DA1 5EW Dartford Kent UK 18 February 11
Hi, I'm 54, have had mouth ulcers everyday since I was 19, I was three months pregnant when the ulcers started. Ulcers can last 4-5 weeks, and go through painful stages, I sometimes don't notice that I have 5 or 6 ulcers in my mouth now. Sometimes 30 ulcers at a time, but mostly 6-15 at a time. Swollen glands too. I was told I was just unlucky some people just get mouth ulcers. couple of years ago, started to get tender spots on my head, veins swelling in the temples and breasts. Jaw very saw, started suffering from teeth absessing. Sore knees. Head aches. Really tired. I could hardly move my arm & shoulder, being told I had torn my rotacuff.Hot flushes for 10 years, with no relief from that symptom. Most recently vaginal ulcers. Prednisone is my friend and I have only been placed on it in the last year or so. I find the medical profession very patronising, they only want me to go away. I don't quite fit and any boxes. Even the Rhuem. didn't come up with Behcets, It was me who researched it and suggested it. What is most annoying is prednisone was around when I was much younger, and GP (doctor) did not help. I have been so let down by the medical profession. Reading all the comments above, I see the medical profession doesn't know where to put us, so they abandon us.
Leigh Brown, Wellington, NZ 21 August 11
Hey all I've had behcets basically since I was born and I'm now 30! I have been lucky to go through 1 remission in my life where I got to work for a year! But my condition is so bad at the moment I barely can get out of bed! Not writing this as a scare story! I keep positive, and rarely not have a smile on my face! I have nearly all symptoms except ulceration of the eyes!

I've been sent to shrink and called psychosomatic because I have a better understanding of this disease than most of my doctors lol!

Right few tips! Steroids are great in short run but the side effects for me out way the good points! Don't put on brave face and never take no for an answer off the doctors! I'm being put on new drug hopefully (can't remember the name) but if it helps I'll write again but it's suppose to shut down the fighting part of my immune system so who knows! Next my amazing doctor told me a great tip on ulcers if any of u have asthma as well use the brown pump and spray straight onto ulcers it actually worked with my last bunch!
Got a quick question does anyone suffer from insomnia? Recently
I've been unable to get to sleep! Take tonight it's 3.40 am still not sleeping!

Last but not least the question about is it heredity I have always been told it's not but my mother suffered from crones disease and bad mouth ulcers all since she was younger so doctors are looking into that!

To all fellow suffers I know you don't always feel like this something I always try to live by is remember theres always someone worse off than you! All keep your chins up and keep grinning through the pain!
Laura Morgan 3 September 11
Hi All
I have had RA for 19 years (during my 3rd pregnancy) I have suffered from bad mouth ulcers all my life, but my rheumatologist told me they were behcetes and she prescribed a brown asthma inhaler, puff the air into mouth keep mouth closed for 1 minute and release the puff (do not inhale) This has been fantastic and my periods of ulcers have drastically reduced and they clear up very quickly when they do appear. I also take 6 sulphasalazine, 2 gamolenic acid and 2 naproxen for my other arthritis complaints and have just been put on 2 daily of hydroxychloroquine, this all keeps me going and I have a good life (as long as i take the tablets). try the inhaler its great - I tried all the tablets, and lotions previously but none were effective and left me with deep gouges in my tongue.
Cheryl Kitt UK Nov 2011 15 November 11
Been diagnosed for four years paise Jesus! I know most people would question why I would say that. It's because for two years I thought I was crazy,about to die, and so alone because I was so embarrassed to tell any of my family members or friends. I have had mouth ulcers all my life. I think that mouth ulcers are pretty common because I never felt alamed over having them. But when I was about 23 yrs. old I started getting one or two in my vaginal area. I thought maybe I scratched or something. Then they started coming more regular. So after dealing with it on my on thinking maybe it's something I'm eating or soaps maybe I finally went to the dr. Of course she says it's herpes. But the test came back neg. Keep in mind I have been married at this time 8 yrs.so the whole time the test was sent off I'm thinking my husband has cheated and he's thinking the same thing about me. More stress!!! Then I start getting knots under my arm I go to another dr. She says it is stree. Then my ankle swell up as big as a baseball. I go to another dr. I'm told to were better shoes a pair with good support!! So I'm running around in circles never really putting all these symptoms together. I had a huge ulcer on the tip of my tongue it would not heal. So again I go to another dr. She tells me it's is herpes. I explained to her that I had already had a test for herpes,but she wanted to do another one. Again neg. Keep in mine I don't have insurance so this is even more stress. So I gave up. I knew something was wrong with me but the doctors couldn't help me. Then in 2008 I had 5 or 6 huge ulcers in my vaginal area. It was so painful I went to the ER. I explained to the dr. All my symptoms I had been having for the past two yrs. I told him about the ulcers I had down there, I showed him the ones in my mouth. I told him I was falling apart! I couldn't raise my arm and it had been like that a week.it was so painful I couldn't brush my hair. So he looks at the ulcers down there and I told him if he told me it was herpes I was going to do my best and kick him out of the room!!! I meant it too;)) he said he wasn't but they did have to do the test. He told me he believed he knew what I had. He called it behcetes I was so happy. I finally had someone who didn't think I was crazy. Anyways long story short turns out I was pregnant and my obgyn got me setup with the doctors I needed to see I think my symptoms were worse during pregnancy after I had my little girl I was put on choline, folic acid and I use creams and alot of oral gel. I hope who ever is going though this will find a system that works for them I still have flares but not as many and not as long. I pray for us all
Jennifer alabama 11 February 12
IM SURE I HAVE THIS DISEASE, I HAVE MOUTH ULCERS, VAGINAL ULCERS, ANXIETY, SLEEP PROBLEMS, FOGGY BRAIN, MEMORY LOSS, JOINT PAIN,NECK PAIN, CORNEA SWELLIN VISION LOSS, WEIRD HOT SPOTS ON BODY THAT MOVE EVERY MONTH, Scalp pain, little bumpy marks on eyebrow and nose and shin, panic attacks, night terrors. I could go on and on... Really taking a toll on my marriage....
Kristi 9 March 12
I've had oral ulcers and really bad genital ulcers on & off for two years also just getting small nodules like follulicolitus on arms , also achy joints - but get the flare ups say every 3-4 months ... Been to university hospital in aintree for one appointment with a registrar ( not seen the Proffesor yet ) ..got a follow up appointment in 4 months .been prescribed colcachine and betamethasone valerate Anyway he says that I have probable Behcets but only mild at the moment - well it doesn't feel very mild to me ! It's agony ... Then this guy sends letter to my doctor ( Gp) and says if no change in 4 months we will Probaly discharge him from our clinic !!! Feel let down because just because my symptoms have not progressed yet to neuro or eye problems yet he's gonna ditch me from clinic ... Feels so dismissive ! 10 days after first appointment I attended Behcets clinic with bad flare up ( no doctors present ! ) nurse says she will document symptoms ... But I still feel really short changed .
Hugh 14 April 2012 14 April 12
I was diagnosed with Behcets last year. I had terrible gastrointestinal symptoms at the time and I still suffer from sores (mouth and genital), joint pain and chronic itching of the skin. I started taking a supplement called VSL 3 that has helped tremendously with the GI symptoms. It's relatively easy to get over the counter at Costco or CVS. Completely eliminating sugar from my diet has helped manage Behcets too.
Linds 20 July 12
Hello everyone ! I haven't posted on here in a very long time. I have Sjogren's, Bechet's and Lupus. Last year was eventful. In Sept, I had multiple pulmonary embolisms (blood clots) in both lungs and a saddle embolism (most of the time fatal). Also. A DVT in the left leg. Now on Coumadin for life !!! This was thought to be caused by Bechet's. Also last year my daughter, 13 at the time, had %55 of her liver removed due to a rare condition known as Caroli's disease. Hope all is going well with everyone :)))
Christy from TN 4 August 12
Hi, Anybody suggest me a specilist for Bachets Disease in Bangalore(India). It will be greatful to you all. Priyatham, Bangalore, India
Priyatham 6 October 12
Hi all. Gordon here from Dartford, Kent in the UK.

Things have been pretty good and quiet for me since I last came onto this site, but a few months ago I was virtually unable to move without extreme pain. Everywhere seem to be affected.
Luckily for me, I have a friend who is a nurse who came to see me 2 or 3 times a day. Lovely lady and a good friend. She cooked for me, fed my cat, and generally cared for me for about 2 weeks. She came around even when she was on night duty. Thanks love xxx.

Does anyone know if it is common to have periods of symptom free, then periods of ulcers, pain, and various parts of the body affected?
I consider myself lucky as the "attacks" I have are sporadic. Not continious as many of you guys seem to have.

I don't go see my Dr any more about these "bad" periods, as all they prescribe are pain killers, and anti inflamatory meds which do not work, and various ointments. They don't work very well either. Still, it could be much worse.

So, keep happy and keep smiling. Don't let it win.

LOL to all. Gordon.
Gordon Tickner. Dartford, Kent. UK 11 October 12
Me again.

P.S

I am also now losing my hearing, and the sight in one eye, but that may be my advancing age. I will be 75 next year.

Keep happy.

Gordon.
Gordon Tickner. Dartford, Kent. UK 11 October 12
Hello all, Ive been diagnosed with BD for about 6 weeks now, after almost a year of most symptoms. I am a 22 yr old male. The toughest part for me has been the mouth ulcers, Ive had a hard time eating and even speaking while I have them. Also Ive had periods of a few hours to days of daze and confusion, but it's only happened since I was officially diagnosed. Not sure if it's more of a psychological thing or PTSD as some call it. Luckily the dermatologist that diagnosed it prescribed Colcrys, and so far no blisters, which according to my outbreak timeline, Ive been due for blisters for at least 2 wks. Hoping this Colcrys is working. Also I read that homeopathy has been a good alternative for some. Im going to give that a try as soon as I come up with the initial $1500 that my local homeopathic physician requires to see you (he doesnt accept insurance altogether). I will post again in a few month to let you know about that progress, but it does sound like a great option since "mainstream medicine" doesnt seem to have a good grip on this whole disease. Im hopeful for all of us that they find a cure for this, or a really effective treatment. A thought that comes to mind is stem cells? I do believe a good family friend of ours is part of the scientific research communty, and next time I see him I will tell him about my condition and what seems to cause it. Hope he can at least give me hope even as a long shot that his research could yield an answer to this terrible disease we share.
Stay positive. Stay strong. You are not alone, and more answers are on the way.
Rob, North Florida 26 October 12
Good afternoon everyone. Gordon here from Dartford in the UK.
Things have been good for me so far this year. No pains, ulcers, etc, etc. Its wonderful. I have to use a stck when I go out, but thats a small price to pay.
I know from reading various letters on the page, that many people on here are far worse off than I am.
I can only hope that all of you find some relief from your symptoms.
I was told at the beginning of 1980, that I would never work again, or walk properly, be in a wheel chair within 6 months.
Well, I wasn't having that and proved the specialist wrong. I worked until my situation became worse and retired on medical grounds when I was 61.
I can still play sillies with my young grandchildren, and they call me an old 3 legged dinosaur.

Don't let it get the better of you. Most of the time I laugh at it. Behcet's, HUH.

Enjoy life as best you can, and be happy.

Keep well and keep safe.


I am 75 now and still walking about, no wheel chaire for me.
Gordon. 26th June 2013 at 1403 hrs 26 June 13
Thanks Gordon, brilliant uplifting post. Best wishes to you.
Dom Walton 27 June 13
Good Morning everyone. Gordon here from Dartford in the UK.

Well, it appears that I spoke way to soon as I have mouth ulcers, pains in various joints that overnight they go from one area, and reappear in another area, cannot move my left hand, too painful, so I have it in a wrist splint, and generally total lethergary. Loads of small painful septic spots as well.
I have needed, well, my body told me that I needed to, sleep, and thats all I have done for the last 3 days. I wake in the morning, feed my cat and let her out, then go back to bed, only waking up when I need to visit the toilet, and check if my cat wants to come back in. I have eaten very little over the past 3 days. I don't want to eat actually, but I have been drinking plenty of juice or water.
YUK, I must stink like a dead pole cat that has been lying in the hot sun for about 3 days, as I haven't got the energy to go shower etc., or shave come to that. Must look like an old tramp.
Today I really must shower etc., and also I will try to find someone to walk to the local shops with me as my balance has not been/is not good.

So sorry to be an old grouch, as I usually ty to be cheerful, but for some reason this session has really got me/is getting me down.

OH!......... Any one any idea how we get this Behcets Syndrome? I am of Italian stock although my Dad was English. However, A female cousin who is totally Italian, also has some obscure disease. I know that BS is supposed to hav been first diagnosed in Turkey, but thats about all.

OK people, I am going to shave, shower etc, then hopefully find a neighbor who is willing to come to the shop with me.

Keep well and keep safe everyone.

Gordon.
Gordon. DA1 5EW Kent, UK. 11th August 2013 11 August 13
Gordon from Kent again.

Speaking from presonal experience, I would advise "STAY AWAY FROM STEROIDS IF YOU CAN". I was prescribed Steroids many years ago as a "Cure All", but what I wasn't told that continual usage of steroids can/will cause low bone density, and they were pumped into me via injections and tablets. That is what happened to me. So now I have Low Bone Density, so I can't even take those now to ease any symptoms, pains etc.

The old Dettol mouthwash, circa 1980's, which needed to be diluted before use, was really good if you used it undiluted, and after you had come down from the wall, the mouthwash had started to "burn?" the ulcers aout. Daily swishing around in your mouth then spitting it out. Worked wonders and cleared them up after a couple of days. Sadly Dettol no longer manufacture this product.

Gordon. About 15 minutes after than the last message.
Gordon. DA1 5EW Kent, UK. 11th August 2013 11 August 13
Hi Gordon, great messages as always, I hope this flare up is a short one. Fruit juice does not help mouth ulcers (in my opinion) I think it makes them worse. Best wishes to you.
Dom Walton 12 August 13
Sweet sweet sweet...talk about making the bitter stand out.. . Why not try relish, or believe it or not something like a pickled banana pepper, or lemon juice?. . Or instead of mixing it with, why not offer it in little sips with a cracker or something to wash away the taste.. . Has your doctor tried Dexamethasone yet? More kids prefer the taste of it over the Prednisolone.
anabolics on line 31 August 13
Where has everyone gone? There used to be many people on here some of years ago. I used to enjoy reading other peoples messages, and often they were of great help. I also enjoyed putting my two penny worth in as well.
Gordon. 21st September 2013
Gordon Tickner 21 September 13
Gordon from Kent in UK.
Well. I guess that nobody uses this site anymore. Pity. It was good sharing experiences with other sufferers.
With rapidly approaching old(er) age, some of my symptoms are getting worse. Pointless going to the Dr, all they give me are pain killers. My balance is now virtually gone as well now, so now, if I go any distance, I try get someone to come with me. Still, never mind. I have done many things that other people have never had the chance to do, but I do miss my sports.
Just keep laughing at Behcets. It's a pretty good start at coping with it.
Still not in a wheelchair. (Thumbs nose at the guy who told me years ago that I would be in a wheelchair about 18 monthe after he diagnosed, (haha)
Take good care now people.
Gordon. 23:11:2013
Gordon Tickner 23 November 13
HUH ! Now my vascular surgeon tells me that I MUST stop smoking, so I have purchased an E.Cigarette. I must say, it works wonders. No tobacco, no smelly smoke or clothing, NO COUGHING, and very much cheaper. also a big bonus for me is that I chose coffee flavor. Now that IS nice. But by far the best part, I HAVEN'T WANTED TO SMOKE SINCE i BOUGHT THE E CIGARETTE, and that was about 10 days ago. I have tried to quit many times, but this appears to be the most the most successful. Oh well, back to bed and try to sleep. Insomnia strikes yet again. Most of my meds say that "Sleep pattern May Be Disturbed". Well there is no maybe about it. I am lucky if I have 4 nights of painless sleep out of 7. Thats enough of moaning. Happier times ahead watching my grandkids opening their Yuletide presents. Love 'em to bits.
Keep laughing, keep well, and keep safe. Gordon.
GordonTickner. 41, DA1 5EW, Dartford Kent. UK 1 December 13
Gordon: it is interesting that you should mentions e-cigs. My wife was just diagnosed with Behcets (she is 34) and I began researching it and came upon several studies that suggest that smoking and/or nicotine replacement therapy can suppress or eliminate mouth and genital ulcers. Has anyone else noticed this? Might e-cigs or nicotine patches be a viable treatment option?
Paul 12 February 14
May 23rd 2014.
Hi Paul. From my own experience, I would say that smoking tobacco does not help mouth or genital ulcers at all, as when those symptoms were really bad for me, I was a heavy smoker. If anything, smoking made the mouth ulcers way way more painful. Don't know if the patches would help. They certainly didn't help me stop smoking. Maybe, it is the nicotine content in the patches and e-liquid without all of the chemicals associated with burning tobacco.
I have an old diary from a drugs and medicines company, dated around the mid 1920's, and many of the medications contained nicotine. I must say though, that since I started using the e-cigarette, I have been remarkably clear of ulcers. Coincidence, or what? Also my overall health has improved as well.
I know that I have a fairly mild case of Behcets compared with other sufferers, and I hope that your wife has just a mild case if it is positively diagnosed. Same as everyone else on this site, we unfortunately have to learn to live with it. Many people on here have it really bad.
I hope that this does not sound rude, rudeness is not intended I assure you.

My regards..................
Gordon.
Gordon Tickner. Dartford Kent UK 23 May 14
Hello friend.. i am zoya from india.. and i m also suffering from benchet syndrome since last three years.. my treatment is going on.. i am still not well but better than earlier.. if you all want to knw what i use tibeat medicine nd my food you can ask.. may be this can help you any how not 100 % but may be 50%
Zoya 29 September 17

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Bechetís Syndrome

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