I'm sorry to hear that. But don't lose hope! Some people need to try several medications before they find one that is really helpful. But there are sooo many more treatment options (biologics in particular) today than there were even 10-20 years ago. I know it can be frustrating trying to figure out what will work for you and what won't. But you'll get there. Don't be discouraged if the first few meds you try don't work. Treating Behcet's is as much of an art as it is a science. It can take time but you'll get there.
Thank you for your story. I'm struggling for last 6 years as well and finally just 2 weeks ago was diagnoses with Behcet's disease. At some point it is relief , finally I know a name of what makes my life that horrible , but still so much unclearness , how should I keep on living , what should I do and so on ....
I'm sorry to hear that you've been struggling for so long. Getting diagnosed is definitely a step in the right direction. Unfortunately, uncertainty is part of living with Behcet's (or any unpredictable illness). What you should do is continue what you already are doing: educate yourself about Behcet's and about your body, try to connect with others who've been diagnosed, and keep your stress levels as low as possible. The good news is that, for a lot of people, Behcet's tends to get milder with age. Hopefully you'll be in that group.
I know this video is old but I’m glad I found it. I’m 25, but was diagnosed with behcets at 12. It’s physically and mentally no joke. Thank you for sharing
You're welcome. I'm sorry you were diagnosed with this. I was diagnosed at 16 myself after years of strange symptoms. If it makes you feel any better, it was right around the age of 25 that my own Behcet's calmed down significantly. My 30's were actually the best years of my life. And my 40's (I'm 43 now) are turning out to be just as good. So keep you chin up. Things can get better :)
@@behcetsdisease I sure hope so! I got really sick about 8 months ago and have had continuous flare ups since. I recently started otezla so I’m giving it a shot. I’ve heard it’s helped a lot of people, but it’s currently making my joint pain so much worse. I’m going to stick with it though and see if there’s any improvement
And that right there is the absolute best possible attitude you can have. It's sooo important to never lose hope. But at the same time, you have to be honest with yourself about your body. I was in denial for years, refusing to believe anything was wrong with me. When I finally learned to accept the Behcet's, things just kinda came together better. I hope the Otezla has started to give you some relief. But not everyone responds favorably to it. Fortunately, there are several other biologics available now that weren't even a decade ago. So don't lose hope if it doesn't work for you - there are plenty of others to try
I still don't know i have behcet's disease or not. Last month i got some ulcers on vulva and mouth ulcers. I frequently get mouth ulcers as atleast one time in two months. Last month i got 5 ulcers in my mouth. And this month one. Also i have severe knee and back pain. When i got genital ulcer i went to a gynaecologist..she suspected behcet's but then i went to other gynaecologist they suspected its uti because as i had ulcers on my genitals so i had a burning sensation while urination...my crp was 24mg/dl then after 5 days it decreased to 3 mg/dl. So is it behcet's disease? Also sometimes i get headache (Edited) - last month when i got those episodes of ulcers i got some on palms too
I'm not a doctor, but what you're describing certainly sounds like it could be Behcet's disease. For doctors to make the diagnosis, generally 2 of the following 3 must be present: oral sores, genital sores, eye inflammation. As far as sores down there, in women, the vulva is the most common location they're found. So I'd suggest seeing a rheumatologist - a doc who specializes in diseases like Behcet's - and go from there. Best of luck to you!
سلام. به یک روماتولوژیست مراجعه کن. آزمایشهای hla b5 و hla b51 رو انجام بده مشخص میشه اگه بهجت داشنه باشی. بعضی وقتها علائم خیلی متفاوتن ولی آفت دهان و آفت تناسلی خیلی رایج. متاسفانه منم تازه متوجه شدم این بیماری رو دارم😢😢😢
@@jiyadey3823 Hello. This disease is diagnosed based on the symptoms and response to a series of drugs and hla b5 and b51 tests. Unfortunately, I am also suffering from this disease. My symptoms include mouth sores. Fatigue, lethargy, body pain, body burning, and mood swings. Imam may have different symptoms in different people, but the main symptom is mouth sores and it is usually more severe in men.
Dr said i had neuro bechets pls sir help me you know when available gene tharapy for bechets pls sir help me nd pls researching for latest news about gene tharapy.i need your help pls sir 😢 😭
Gene therapy - for people like me and (presumably) you of limited resources - will probably take many years before it's available. The ultra wealthy are already using gene therapy for stuff. But for us with Behcet's, I wouldn't hold my breath. It's going to be a long time, probably longer than I'll be alive. That being said: With CRISPR technology, the roadmap to a cure for Behcet's certainly looks promising. But it's years (decades) away unfortunately.
Hi, I hope you are doing well. I had numbness in my legs for 2 months and one night suddenly my right eye got blurred and when we went for diagnosis they came to the conclusion that it is Behcet, so I hope if you can please tell me that if my eye is blurry because of Behcet’s then is it curable? And the doctors said that the meds can have a lot of side effects so are they big side effects or a person can live normal life with them?
I'm sorry to hear you've been diagnosed with Behcet's. I had eye problems when I was younger but they got better. Behcet's, unfortunately, isn't curable. However, the symptoms are treatable. I've lived an incredible, full life and so can you. Lots of people with Behcet's are able to live "normal" lives. Best of luck to you!
Thanks for your video of been struggling with this for years and years now and I can’t relate more to your video than I’ve ever been able to with anyone
I'm sorry to hear you've got Behcet's, too, but I'm glad you can relate. I know how lonely having this disease can be. Thanks for watching and for the kind words
Hey man! Thanks for sharing ive just been diagnosed with becets 2 days ago after cvst dvt and eye problems and ulcers i miss smoking week alot because im on warfrin ive been too scared to smoke but its good to hear there is light at the end of the tunnel. Take care!
I'm not a doctor, so take what I say with a grain of salt. But I've been on both warfarin and am currently on Eliquis and I smoke (herb) and have never had any problems. But that's me. You have do decide what's right for you. I'm sorry to hear you've been diagnosed with Behcet's. I'm not gonna lie: it sucks. But at least there's lots of great communities of people with Behcet's online to connect with and share info with. Best of luck to you!
Well that certainly sucks. If it makes you feel any better, prednisone caused half my teeth to fall out and gave me hundreds of stretch marks all over my ass. So at least you're not alone in pred causing you all sorts of problems. But I'm sorry you've gone through that.
IM SO SORRY, I HOPE YOU OK, WHEN I FIRST READ WHAT YOU WROTE I STARTED TO CRY , ITS LIKE I CAN FEEL YOU HURT YOUR PAIN YOUR ANGER,BECAUSE IM WITH YOU ,IM JUST AT THE POINT WHERE I DONT WANT TO BELEIVE THAT THESES RIPS AND TEARS IN MY VAGINA AREN'T REALLY HAPPING! I FEEL LIKE MY MIND IS NOT CONNECTED TO MY BODY BOTH ARE PRESENT ,BUT THEY DONT COMMUNICATE WITH EACH OTHER!
Im a boomer weed has been part of my whole life i always found that a little buzz ( couple hits ) would motivate me, anyway Ive burnt the candle at both ends my entire life & now in my early 60s, figured my health has got to go to shit but in the last couple of years few things have became noticeable & recurring and has led me here researching Behcets haven't been to doctor yet but Im pretty sure Im on the right track Ive subbed & reading up everything you have do have any suggestions for me thank you
Just keep doing what you're doing: learning. There are several illnesses that are similar to Behcet's (like Lupus, for example) and share a number of common symptoms. So it can be really hard to figure out which it is. But I'm glad you've found the stuff I've put out to be helpful. Weed's been amazing for me
Thank you for the kind words. When I made them, there was nothing on Behcet's here. I just wanted patients, caregivers, and providers to have at least some info about this rare disease. Again, thanks, bro!
Such a relief to be able to find others online who have had Behcets. I was hospitalized for five weeks last year with pancreatic cysts. They got so big that it pulled the tube off that connected my pancreas to my digestive system. Had to be fed via a pick-line to slow weight loss, 66 lbs in three months. One thing I can say that has been super helpful is Plaquenil. I have chronic fevers, and Cleveland Clinic gave Plaquenil to me to help with that, but it also helped with ulcers. I still get them, but not so much in my mouth and down below. I do still get skin ulcers on my bum and scalp. Anyhow, thank you for your candid RU-vid videos. Huge help!
I'm sorry to hear what you've gone through but I'm glad you've gotten some value out of my videos. I've heard from others with Behcet's that Plaquenil has helped a lot. Hopefully it continues to work for you. The CC is great. I know an RN that works there.
Though I'm sorry to hear you have Behcet's, I'm glad you found me, too. The best place I've found to meet people with Behcet's is FB groups. There are several great Behcet's groups.
You are a Behcet’s cheerleader. I’ve was formally diagnosed in 2005 but struggled with symptoms starting in 1999. Everything you talked about really hit home. I’m gonna have to listen to this video if I ever start dating again. Thank you thank you thank you 🙏🏻
Omg you sound like me ! I’ve had this curse twenty years ! Now my son has it ! I can’t. Some days I don’t even want to go on anymore I’m tired now ! I never complained but now I can’t walk wheel chair and home bound .. I can’t do much my bedroom has become my prison cell ! Sorry if I sound so morbid it’s so hard now .
I'm sorry you've gone through what you have - your son, too. That's my biggest fear: that my son has Behcet's, too. But so far, he hasn't showed any symptoms, fortunately. I've been bed/housebound for periods of time (like when I've gotten massive clots in my legs) and it's awful. So I really feel for you. Hang in there :)
@@behcetsdisease thank you so so much , in all the years I’ve had this I have never spoken to anyone else who had this thing you are the first ! I don’t know why I finally did I think it was your story . It was like mine . I had a bi pass left leg when I was 40 years old and perfect shape size 4 and exercised everyday . The fatigue was crippling when I had work . The DRs had n bedside manner . They told me I was looking for drugs when all I wanted was yes relief but also an answer . My husband and I thought I was cracking . The boils , canker soars , Folikulitis was and is miserable . The rash that grows in dark sweaty places I have three different rashes as we speak . Lymphedema both legs I’m in. A wheel chair and finally feel like giving up . My son has a rarer cancer only caused by this thing see I hav eit all over he has it if the GI track I was so sick yet I had to try to help him when he was screaming for death it was crazy . Your story hit me like someone else knows thank you !
@@teecop4735 I'm glad my suffering has not been entirely in vain. I begged for death for over a decade when I was in constant pain. Things for me have gotten better, though. And they might for your son. I sure hope they do. Don't give up! Either of you! I know it's hard sometimes but you've got to keep pushing forward, taking things one day at a time.
@@behcetsdisease thank you 🙏 I won’t I can’t I have a great husband and daughter still , I’m waiting now for all the infections to stop so the dr can us this drug in me it like an IV but I can’t have it till I’m cleared with no more infections because it can cause more problems . But thank you for your time . May you have all good days !
Thanks for sharing your story! I've been in remission 14 years now, Humira helped me. I did lose enough vision to upend my life. I'm great now!! I have 4 adult children and none of them have it. I did have blood clots issue 2x about 7 years ago, but had no idea Bechets caused clots, so I will have to go do some research. Best of luck to you both!
I don't mind the swearing at all. I think people who've had very difficult and burdensome lives are more likely to casually swear. The swearing can be understood like those people are being genuinely themselves.
That's just it. The last thing I want to do is offend anyone. But, at the same time, I want to be authentic. And when talking about something as horrible and painful as Behcet's, it'd be impossible to be authentic AND not swear. I DO try not to swear excessively, though. But when I'm angry, every other word that comes out of my mouth is a swear. I inherited that from my dad haha.
I CERTAINLY APPRECIATE THAT YOU ARE BEING YOU! I RESPECT THAT AND I THANK YOU FOR BEING YOU! PLEASE DONOT FRET IM NOT AT ALL OFFENDED! THIS IS WHO I AM! I DID RELATE ALOT TO YOUR STORY AND I THANK YOU FOR IT! I JUST DIDNT REGISTER WITH SWEAR WORDS! BUT HOW ABOUT THIS? ,PLEASE FORGIVE ME FOR THE WORDS I USED? YOU BE YOU! BECAUSE EVEN THO I DONT KNOW YOU I BET YOUR AN AWSOME PERSON! ANYWAY WE BOTH GOT BACHETES, SO YOU KEEP WRITING AND ILL KEEP READING ! PLEASE TAKE CARE OF YOU, YOU 100% DESERVE IT! THATS WHERE I AM RIGHT NOW, TRYING TO CONVINCE MYSELF OF THAT EVERY DAY!
@@cori.0616 I appreciate that. And thank you for all the kind words. I know swearing is something that many people don't like, but I'm glad it didn't offend you cause that would've been the last thing I wanted to do. Thanks for taking the time to write this. You deserve to be happy just as much as I do - as much as anyone does. Don't forget that.
I'm no stranger to anxiety. And I worked with young adults with Asperger's for 15 years. So I know alllll about it. Don't hesitate to contact me if you have any questions about anything. I've been living with Behcet's for several decades (in case I didn't mention that in the video).
Have u read the book “Food Paradox”? It is a book about eating anti inflammatory. It’s helped me with have less inflammation. Good luck. I’m sorry we are going thru this.
I haven't read that particular book. But I'm well versed in nutrition. I've tried over a dozen different diets over the years (keto, low carb, paleo, all meat, IF, etc.) and none of them have done anything to reduce my Behcet's symptoms unfortunately. However, I know some people who have had a lot of success by making dietary changes. It seems to work wonders for some people and not at all for others.
Hey Allis, hope you are still doing good. Wondering if you’ve ever searched for aHSCT and if it is a valid option for your case? It is quite expensive but I’ve came across some studies that show good results for Behcet’s cases. Some of those who had it stayed in complete remission for long time.
I don't know much about it, honestly. And I don't know anyone with Behcet's who have tried it. But I'll do more research into it and maybe make a video about it at some point.
@@behcetsdisease good luck with that. The problem with Behcet’s is that it is rare although the way I see it it isn’t very rare but it is overlooked. This procedure has good results with MS. In case of Behçet’s, there have been around 9 who went through it and I think around 50% went into remission some for long time.
@@proudman6651 It certainly looks promising but, like I said, I'll have to do a real deep dive into the research before I can say anything for sure. But thanks for bringing it to my attention.
If you use Facebook, search for "Behcet's groups" and you'll find several with thousands of members. If you use Reddit, there's a Behcet's subreddit called "/r/Behcets" I hope that helps!
@@behcetsdisease I've definitely looked at your Reddit page, thank you for making it! I also have your book. Would you consider having a discord linked to your Reddit and Facebook? I personally don't use Facebook but I would love to chat with people and give/receive support in real time. If there is one then... I'll just be off now! P.s I can help in any way if needed
@@KP-hp3bg A real-time support group is a great idea. You're not the first person to mention something like that. I think it would be great but simply don't have the time to start it right now. I've shared the idea with the ABDA and they like it but I get the impression they don't have the resources (they're mostly volunteer) to get the ball rolling on that. Maybe you could contact the ABDA and tell them you'd be interested in starting a Discord group? I'd be happy to advertise it across the various platforms I'm on. But I can't be starting anything new right now: my time is spread too thin as it is. In the future, perhaps: I do think there should be a live support group.
@@behcetsdisease glad to know it. My brother was just diagnosed with the same disease. I personally feel connected to everyone having it. They say in some cases with time it becomes less severe. Hope you are lucky enough to reach that and eventually reach a remission after all those years you lived with it. Stay well .
@@proudman6651 Yes, Behcet's disease often gets less severe in time. Hopefully that'll be the case with your brother. If he or you have any questions about Behcet's, feel free to message me. My name's Ellis Michaels and you can find me on FB, Reddit, RU-vid (obviously), or my website: ellismichaels.com
@@behcetsdisease hi Ellis. Hope you are doing well. I don’t wanna be a burden to you but you know there isn’t many to ask about this disease. I’ve learned from your website that you had multiple DVTs. My brother just had one a month ago on his leg. I understand recurrence is common with Behcet’s. Would be helpful to know how did you manage to exceed it. What medications you were put on and did it help to prevent clots to reoccur. And now what medications you are on and how is the disease treating you. Hope I am not bothering you.
Man, I was diagnosed too. All I can say it is fucked up and definitely sucks. The most fucked up thing is that they can not even tell why this shit happened too me. I wish you all the best man 💪
Sorry to hear that, bro. I wouldn't wish this shit on anyone. You're right: the mystery is the worst part. No one can tell you what's causing it, nor can they tell you how to cure it. It IS fucked up all the way around. Best of luck to you. Be well!
I had weird symptoms for a while. I had multiple episodes with swollen testicle and sores there+ sores in the mouth that I have had as long as I could remember. I also got erythema nodusum. Unfortunately I ignored all of these symptoms until my leg swoll up exactly a year ago and turned out it was a blood clot. Time went by and those other symptoms came and disappeared until last summer. The sores didn't go away and I went with almost constantly swollen red spots on my legs(erythema nodusum) it kind of calmed down but then I got neck pain. Mild at first but after like a week it got intense. I got fever and the erythema nodusum came back. I got to the doctor but they didn't know what it was. They took MRI CT and all of those things. After a while they found out that it was a blood clot which they thought was weird since I was on blodd thinning injections already. Then they knew something was wrong and they did research and looked at rare diseases. The doctor called us and asked if I had any of those sores, I said yes and we got called in to the hospital and they found out. Put me on intravenous prednisolone like 70mg or something, colchicine, azathioprine. I have heard and read that the disease some times kind of burns out after time, so I am hoping that I will have few episodes of it.
That's true. For a lot of people, it hits hard at first then fizzles out over time. For me, my teens were the worst by far. I've had some clots in my 30's, but the oral and genital sores stopped in my mid-20's. The most important things you can do are take care of yourself, keep your stress levels as low as possible, educate yourself, and connect with others. It sounds like you're doing all the right things. Hopefully you'll be one of the lucky ones who the disease goes away over time.
@@behcetsdisease i hope so. I have been working out pretty hard with weights without any problems+ I am cutting out as much sugar as I can to reduce chances of inflammation. I am also starting to train cardio. Hope I can be able to work out as I want without it causing issues.
@@vegardhp1 You never know. My mom also used to get them. For me, I always had a mouthful of sores until about the age of 25 when they just stopped. Weightlifting is excellent! Good for you. I didn't start lifting until I was 27, but it changed my life (strength, confidence, muscle, etc.). I generally maintain a high-protein, low-carb, moderate-fat diet. It really sounds like you're doing all the right things. One last thing: don't stop learning. You're obviously quite smart. If you haven't figured out that the healthcare system sucks yet, you will. I could see how bad it when I was still in my teens. If you want to live a good life, you're going to need to learn as much as you can about Behcet's and your body in general. Don't rely on doctors. There are some amazing ones out there but there are a lot of terrible ones as well. The more you learn, the better off you'll be.
It has helped me with mine. My story about pot is same. Dabbled when 16 hated it stopped until a year after I found out I had behcets at 39. My husband grows it for me
Omg, THANK YOU. I have Behcets and this is so true. It is an incredible struggle. I look for actual people who have Behcets on RU-vid every so often and I'm so glad I came across your video. Thank you
I found out when I was 40. I have had the symptoms as long as I can remember but when I was 37 was when it got bad. I have uveitis. Keep having stranger things happen. I’m sorry to hear your eye doctor was a dink! Thanks for sharing. My story is long as well; pretty much close to yours. It is so hard because it’s kind of a lonely disease. Maybe they all are?. Not to get into too much detail but I have seven other siblings six of which are addicted to painkillers so I refuse to take any over-the-counter pain medication so my dear husband (Jeff)started growing marijuana for me which is legal in the state of Maine and it has helped tremendously. With the pain and stress of this disease. Question: did you ever be diagnosed with H-pylori? I ask this because I have been doing a lot of reading and it seems like they’re starting to discover these parasites and bacteria like H. pylori that causes the immune system to literally go into overdrive which kind of kicks in the Behçets. I don’t really know the dynamic behind all of it I’m still reading about it. Thank you for sharing your story.
Thank you for the comment and thanks for watching. One of the next videos (not the next but the one after that) I'm going to upload is about cannabis and Behcet's disease. It's helped me sooo much. I'm sorry to hear you've gone through this, too. It sucks. And to answer your question, no, I haven't been diagnosed with H-pylori, but I will look into it. Feel free to reach out if you have any questions. I've got 25 years experience (more, really) with this oh-so-fun disease lol. Be well!
