How you deal with Behcet's

[sk3w2000]

Hi I joined on here the other day I got diagnosed last year in October I am 17, (really lucky to be diagnosed at this age). Just wondering if any had been diagnosed at this age or older but still young I would love to know how you all reacted when you got told, how you deal with it on a daily basic and are you still able to do the things you enjoy doing?

[UKADMIN Partner Behcet's Syndrome Society]

Hi there and welcome to the Behcet's community on Health Unlocked. We have so many wonderful people who post here and are sure you will get some good welcoming responses soon. If you are in the UK and need anything from us as a UK charity, please email [e-mail] All the best to you.

[Hidden]

hey scew if you dont mind me asking whats your symptoms and what do you think tiggerd it for you , mines uveitis atm but started with mouth ulcers and joint pains at 24 im 25 now and its hard to understand as doctors know almost nothin about this

[sk3w2000 in reply to Hidden]

My first symptoms with out me knowing was Tonsil stone after I had an opearation to have them taken out I started get mouths ulcers on my throat. I would always be very tired even if I slept for 8 hours and did nothing. I would get uper in my mouth atleast 3 times a day for 7 years. It wasnt until I got put in to hospial because of it being that bad. My doctor did not have a clue what was wrong with me and told me it was a faze and it will soon go got eked up getting other doctor she had researched everything and still didnthe know. My mum was the one that in a way diagnosed me because she had research it all and found out before hospital speacialist told me.

What I think triggerd it i was on holiday and the heat was so bad i got really ill, with not being use to heat that hot before.

I have noticed that no one in the UK really know or ever heard of it because they all say it something more common in turkish and eastern people.

Hope this helps you

[Hidden in reply to sk3w2000]

ouch i hope your alright now but you dont seem to show the classic symtoms of behcets like eye inflammation or joint pains do u get ulcers in ur mouth and lips? and anywhere else? i know its frustrating as these doctors just give you harsh immunesuppressants are you on any medications? im stilll puzzled at how this just happens out of nowhere their must be some kind of problem from the immune system it cant just be gentic or happen out of the blue tbh

[sk3w2000 in reply to Hidden]

I have had all the eye inflammation and swelling all my blood shots will raise and cause a stabbing pain I am on special eye drops now that I have to take twice a day. I constantly have joint pain, back pain all over my body I cant lift any heavy things anymore. I am on Prednisolone medication I have to take 5mg once everyday until I get put on to new medication. In hospital I got told that my instead of my white blood cell fighting my germs or virus they are fighting with my immune system all time thinking in a way its trying to help me. I have been told it is not genetic because know one in my whole family has anything like this but the hospital believe I was born with it.

[Hidden in reply to sk3w2000]

yes when you say eye inflammation do you mean uveitis cause thats what it does like do you see floaters decreased vision and where does the swelling happen in your eye like the lower eye lifs or the bags underneath cause i thought thats water retantion from the prednisone, and 5 mg is not bad at all im on 25 and the side effects are extreme :(. im also on azathioprine and recently started infliximab infusion i was told tht this is the best medication for behcets as it can bring remission fast and even in doing some research it could restart you immunesystem and possibly stopping the disease at once which i really hope. and its defo not genetic no one in my family has this its problem with immune system im 100 percent sure the doctors just dont know how to find the cause of inflammtion but we were all fine until one day all these symptoms occured which obviously means something happend to the immune system to go over active

[sk3w2000]

Its hard to explain with what happens to my eye like they would get really sensitive to light all of a sudden, yes I would get floaters and my vision would go blurry although not for long I just thought that was normal to be honest I would get my main problems in my lower eye area the swelling would be so bad that it would make my face puffy. And yeah I was on a lot higher dose I think I was the on 25 the same as you but I have been reducing it by 5mg every 2 weeks. the side effect are hard in way we all find a way to push though it and show we are stronger and that we wont let this beat us. It is strange you wake on one day fine the next day your extremely ill then told you have a auto immune deficiency.

[rooser1 in reply to sk3w2000]

My eyes have been really sensitive to light since I can remember. I dont have uveitis, but I do get meningitis, maybe the two are connected since its CNS? But either way- make sure you get slit lamp test done.

[Hidden in reply to sk3w2000]

yeah you see take care of your eye my suggestion is start inflixmab or another bioligical drug as ive been told its the best for behcets then the other immunesupprassants, and i think the puffyness under ur could be side effect from then pred as it causes fat deposit and water retention in face and under eyes thats what ive been told has ur swelling gone down at 5 mg? and like the moon face if u got one from the pred , theirs a behcets center at royal london hospital ive been goin their u get to meet others with this aswell , im from west london where are you from btw and offcourse we have to be strong but when it hits u at young age its like damn i was 24 when it happend ur 17 i could only imagine how u felt but u seem like very strong women and i hope ul recover as uve been diagnosed early stay strong and stay fighting !

[NerdyChristina]

Hello! I wasn’t diagnosed until around 26 or 27, but I was symptomatic as a young child. I had tons of oral ulcers, as well as joint pain and gastrointestinal pain and issues. We were kind of a “tough it out” family, and it wasn’t until I was out on my own I started to search for a diagnosis. Really as a kid and teen it was about listening to my body and avoiding things that caused symptoms to flare up. Stress was a big thing, so if I didn’t stick to a study schedule and got stuck around exams with tons to do, I would always be cursed with horrible oral ulcers. (Actually had an ER doctor tell me how close I was to being admitted once because I was doing chemistry homework in the ER after refusing pain meds for an oral ulcer the size of a quarter and glands so swollen I needed an MRI.) It was after that I budgeted time better haha.

I didn’t let it stop me from what I loved, though I have had to pivot since I have some of the weird rare complications. I’ve embraced medical tools that I need as various body parts take a hit. I did have a few great years on basic drugs, but because I have complex autoimmune issues in my family, they think maybe I’m just more resistant to treatment. My friends have been so wonderful as my support network. The internet has connected me to a lot of Behcet’s patients, too. I look up the Instagram tag a lot now that I’m running my own Behcet’s page. It’s been so wonderful!

[NerdyChristina]

Also there are different types of uveitis. I didn’t get that until I was 29? It was posterior instead of anterior which they said was good because it didn’t have a high risk of causing permanent damage. With that flare I had the dilating drops and steroid drops for a month (yuck!) I also had to take 1 gram of Prednisone IV for 3 days, which sucked because I ended up needing insulin and blood sugar checks. Then I had to taper down for several months. They redid my state ID and I looked like a chipmunk haha!

Now I have weird eye issues from my brain and central nervous system problems. My pupils just dilate and stay dilated. You ever want to really see an ER nurse or doctor panic? Have them shine a light into your eyes while you’re sleepy or groggy, but your pupils just stay giant, haha. I had to reassure them repeatedly that I’ve been told it before, and I would really prefer not to have another CT scan.

[Dr-CJA]

Hello. I got diagnosed in my 20s. I'm now just in my 50s. Since diagnosis I've successfully completed 2 masters degrees, a PhD, hypnotherapy and nlp qualifications plus teaching qualification. I'm now on my third career in higher education after working across Europe in a senior management career. You can have a life with behcets, but you need to be very kind to yourself. Sleep when you're tired, have plenty rest and eat a very sensible diet. How do I manage? A lot of Yorkshire grit and determination. I have followed Dr Sebi and taken cues from Chinese medicine, acupuncture and lots of clinical hypnotherapy. I quit meat, dairy, alcohol, citrus, caffeine etc. In fact I quit anything likely to challenge my immune system or build up uric acid in my system. I don't easy processed food typically and prefer to make my own home cooked stuff, I have travelled the world and go to dance classes. I'm off all pills, except occasional pain killers. So - no steroids, no thyroid treatments etc. Learning clinical hypnotherapy and moving to a careful plant based diet with lots of fresh herbs and ginger etc transformed my life. Yes, I still get occasional lesions and ulcers and ache all over (daily back pain and mobility issues) - but I do yoga and Pilates for a few hours each week and that helps keep my core strong to better manage the condition. Having a life in spite of behcets can be done but it will mean a few major life changes, a lot of tough love and a whole new exercise and eating regime. But humans are very adaptable - so you can soon get used to a lot of major changes to enable you to live a fruitful life. Good luck my friend.

[Dr-CJA]

oh! I got my behcets after spending a few months traveling around East Africa. In Africa I got cholera, bacterial dysentery and giardia as well as a couple of bouts of food poisoning. I was feverish and at one point taken into hospital delirious. I was treated with all sorts of pills. I lost 3 1/4 stone in weight going from just over 10 down to 7 stone. I was literally wasting away. I went to clinics in various African countries, Australia, the USA and Jamaica and Mexico. They couldn't diagnose what was wrong. I then went to Dr in the UK. They checked me into tropical disease clinic for 3 weeks and I was put in isolation. I had too many tests to remember them all. I was put on steroids, 250 mg of thyroxin and various other p pills and pain killers. It tuned out I'd been carrying bilharzia for 2 years which they believed had knocked out my immune system. I had many symptoms, was in daily agony, could hardly walk even 10 years, massive skin welts etc etc. That's when I got the behcets diagnosis. Since then, as per previous message, I changed my life - as the hospital said my body was wasting away and I was going to die as they were struggling to get any control of my symptoms etc. Anyway, I then discovered hypnotherapy and faith healing. It worked for me along with the major life changes. Good luck.

[rooser1]

i started having symptoms at your age. didnt get diagnosed until 25, and ill be 30 this year. (30 F baltimore md here). i had meningitis my senior year of high school (and would continue to through college, twice a year (right around finals), and was just ALWAYS tired. We just chalked it up to "my body is weird." constant ulcers, thought it was food. From your age, i started becoming sucrose intolerant. It started with stomach aches, then progressing to the poops. I can not eat any sucrose now (white table sugar things like cake and ice cream cookies etc, fruits too except berries). Its been a blessing in disguise, as sugar is really inflammatory... so since you got a heads up at young age, save yourself 10 years of frustration- so that you can actually enjoy your 20's (i do feel i missed out as i declined until 25)-

cut all sugar, soda, cake, cookies. eat meat, fats, veggies, (and fruits- for you ). seriously. changing my diet is what turned my life around. i am now 30, sexy and healthy AF. STRONG. I weight train these days. I could barely hang clothes on hanger because of how bad my wrists hurt on a daily- i was a shell of a person. im on IG, @bitterbiologist i post all my food.

when I had my last huge flare, (almost septic, meningitis, of course all the ulcers (mouth and genital), thrush, arthritis, and i ended up losing over 20 lbs in less than 3 weeks (im 5'2 and went back to my high school weight of 110) from the whole ordeal. I had seen over 18 doctors during a few months- all with an "ive never seen this before." my bloodwork was clean. i was "healthy" yet they all looked at me like wtf... so when me and my boyfriend (dating since 17) googled up things (im 25 at this point), we saw behcets. it was like a one in a million disease. were like- are we making my symptoms fit? I dont have the uveitis. I mentioned it to doctors, they shot me down. it was more likely that I had a false negative for herpes apparently- EVEN THOUGH I HAVE BEEN TESTED LIKE A DOZEN TIMES SINCE 17- and we are actually MONOGAMOUS. bitches. i finally had a PA consider it. I made an appt with a rhuematologist. she moved to fishkill, NY- Dr Patricia Taitt- SHE IS THE BEST. By the time I saw her, I had already been managing the bullshit with about 15 different medications so things werent as bad as they initially were. She diagnosed me on the spot with me just verbally telling her my symptoms. Now mind you- i had taken photos of my ulcers, and i had kept a timeline of everything. THIS IS IMPORTANT PEOPLE- write the shit down. dates. photos, also whats going on in your life?! After being diagnosed we reflected, and everytime i was sick, it was around a time of stress either physical (literally just over doing it) or mental stress: finals, school, mom fights, money stressors. etc etc. it all made sense.

but back to your specific question: Before and after the diagnosis: I felt hopeless. I felt DECREPID (that is actually the word i harped on). I was suicidal. I was in so much physical pain, i could barely walk. I was not a person. I could not cook or clean. I went to work, they had cut my work load down to 1/5 (bless them) and then i would come home and sleep until work. I couldnt stop crying. I would just fucking cry allllll the fucking time. I was so consumed in my physical symptoms- i forgot about everyone else. i wrote on pieces of paper and taped them up. Mantras. It started with a "this wont last forever" and then i wrote over it months later with "this is temporary." I was a nut. Doesnt matter. It helped.

when i got diagnosed, it felt like i was labeled as damaged goods. I didnt have a relief. It honestly just started everything over for me. my boyfriend was amazing through the whole thing. he kept being positive, saying how now that we know- we can fight it. I was an idiot and kept looking up all the negative aspects of this disease. I was nothing. i searched the internet for other BD'ers. found 3. stalked the shit out of them on FB. apparently FB likes to send your messages to the "other inbox" when youre not friends with them. SO NO ONE SAW MY MESSAGES UNTIL MONTHS LATER. I FELT COMPLETELY ALONE. I would sit all day in bed, crying and reading. i would have slit my throat in the bathtub (yes this was my plan, but my bf's mom died when he was 10 and i am literally the only woman in his life hes got. i couldnt do that to him. so there's that fun fact. I was not me. There can/will be periods of darkness- youve just got to get through the damn tunnel. THERE IS LIGHT.

SIDE TRACK- JOANNE ZEIS. @jzeis She wrote back to me personally. She sent me a free book about BD. I had spent all my money on copays and medicines at that point- BLESS HER. She did more for me than she knows. maybe she does. bless her.

But through my research- i came upon the candida diet. I had been suffering with thrush for a few months at that point, and the medicines were NOT helping. so I did the last resort- homeopathics. got me some gentian violet, It worked pretty fast, gave me throat ulcers in the process, but hey. I started the candida diet. its essentially sugarfree, carb free as fuck. and of course i started this all right when my appetite came back. I was so hungry and had no idea what to eat. as a person, everyone does the same damn thing "oh i dont eat that bad..." guess what- YOU DO. processed food, eating out, even if its "healthy" it isnt. its loaded in sugars. eat MEAT, FATS, and VEGGIES. on day 10 of this diet, i started to feel better. like i had energy. my joints werent hurting as much, ulcers were going away. That is the day my life changed. this is the day i finally felt like there was light at the end of the tunnel.

have I kept constant on that diet? fuck no- the second i got better ish, i started eating my good old shit, cheesesteak and coke on the wkds? fuck yes. and guess what, my joints would flare. id become sluggish. dont do it. or do it- feel how your body reacts- once you feel good, you just wont go back-

same for managing stress. Now i did not know i had BD in high school or college. Or through most of my 20's.

You've got to manage yourself. This means, no super late nights, dont drink yourself into hangover land, dont take on too many classes and work through school. Dont pack your wkds with a bday party at 3, then another at 7. Dont have a brunch date sunday at 10 am. I did. and I ran myself down. I would crash. I was spiraling down to nothing. all because I WANTED TO DO THE THINGS MY FRIENDS DID. THIS MEANS SAYING NO. If theyre your friends, they will not pressure you. They will not guilt you. Some of friends stayed, some saw me as lame. Fuck em. The ones that stayed... we tight. We have fun. Theyre the best. Thats a real friend, they understand,. They support.

keep a schedule. get sleep. actual sleep. not watch netflix or diddle on phone all day. drink only water. eat well. as for you progressing into adulthood-do i drink now? fuck yes-but its high quality spirits, (vodka and seltzer and lime) or a nice dry red wine. I hydrate. I rest. I dont over do it. dont trash your body- we get worn out faster than everyone else. its a tough pill to swallow. but when you understand and accept the balance- youll be okay. Life is okay and FUN!

Feel free to msg me here or on IG. You've got a whole world ahead of YOU!

TL;DR: You've got a head start- treat your body well and youll be okay!

[sk3w2000 in reply to rooser1]

Hi rooser1, wow reading your post had really got to me and I am so sorry that you had to go through all that reading everything in your post has defiantly helped and has opened my eyes to new areas and on how to deal with it. (I'm sorry I'm not really that good at responding in messages, so sorry if this seems short) I really do hope you are okay and will stay healthy and happy as life is a beautiful thing and we will all find a way to beat BD one way or another.

Sophie

United Kingdom

[rooser1 in reply to sk3w2000]

lol you do you boo-

i am okay, im great. And you will be too.

Thats the point i cant stress enough.

xoxo

[sneakyblonde]

Hi, So sorry you have Behcet's.

Yes, I had Epstein Bar virus,(undiagnosed at the time, late 1980's.), which I later tested positive for.

It took many, many years to be diagnosed with Behcet's and later it became Neuro Behcet's, before I was finally diagnosed in 2009. After two misdiagnosis of FIBRO MYALGIA/CHRONIC FATIGUE, 1997, and MULTIPLE SCLEROSIS, 2008.

The top researchers, now believe, "Behcet's" is actually a "group" or "cluster" of illnesses that make up the disease we call Behcet's.

I hope this helps.

All my best to you,

Cindy

California, USA

[jac76]

Hi, I initially got diagnosed with behcets about 9years ago when I was 31. I pretty much got really sick overnight. I may have been stressed... Just moved house. My symptoms started with backpain and spasms so bad I had to go to hospital. In the lead up I'd had some genital sores that were soul destroying for me but I got told they were thrush or impetigo. The back pain spread throughout my body. I went to Dr after Dr and they all thought I was an "anomoly". It was obvious I was sick. My body hurt everywhere, I could barely walk, I had sores, rashes, sore eyes, sore everything. Even my hair started coming out. Prior to that I'd been well. The specialists thought it was lupus. I eventually changed rheumatologists and remember falling into this man's office telling him to please save me because I thought I was going to die. He put me on 80mg of prednisone that day. He asked me to tell him every thing I'd ever had. I mentioned that when I was young, I got really sick and after I lost heaps of weight and was severely anaemic, the drs found I had an ulcerated gullet. Hundreds of ulcers lined the inside of my stomach. That was when the Penny dropped for him. He thinks that was probably the start of my illness. Here I was 20 odd years later with a new manifestation and a diagnosis. The prednisone helped and eventually I got much better and got pregnant with my son. After he was born I went into full remission. Tbh I never thought much about it until today. I get the odd bout of costochronditis (chest pain) but pretty much symptom free and no drugs. In October, I went to my gynae as I thought I was going through early menopause. Totally dried up and irritated. Bladder problems. I got put on hormone replacement with no improvement. My eyes started hurting a month or so ago, which I put down to hayfever. Very grainy like sand. Blurry vision. Then my mouth went the same as down south. Dry, cracked, white and so many ulcers. Last week I thought I might stop breathing. Then on Saturday I noticed dark blood in my stools. I mentioned all this to my gynae today and he said.... I only know one thing that binds all of those things together... It's something called behcets. He didn't know my past history and had no idea I'd been diagnosed with it earlier. Now I feel stupid that I didn't put two and two together. It's been so long, plus my major symptoms last time were joint pain. I don't have that this time but the other symptoms are so much worse than ten years ago. Ive had bloods done today to check my inflammation levels. I suspect my ongoing bladder problems are also linked. In some ways I'm pleased there's an answer, and I know it's manageable. Best of luck to you. Xx

[najeebo]

Hey, good thing you joined this support group. I browse here occasionally but not as frequently as I used to since I've pretty much eased 99% of my behcet's symptoms by changing to an animal based zero carb diet. I made a thread about it a while ago, check it out: healthunlocked.com/behcetsu...