Interested in symptoms, medications and advice.
Want to discuss with people who feel like me. - Behçet's UK
Want to discuss with people who feel like me.
Written by
Livingbechets
To view profiles and participate in discussions please or .
33 Replies
•
hi Hun, and a very big welcome to our small but friendly group.
From here you seem to have me at a disadvantage as you haven't given us much of an idea what particular bits you want to talk about. BD is a vast range of topics all mish mashed together and someone on here is sure to know something about you problems and will be willing to discuss them with you.
Having made the huge leap of coming out and speaking on here ( and I should say super well done for that in itself ,) Could you possibly give us a bit more of a clue about where you are at with a BD diagnosis or even if you are asking for a relative or yourself. Maybe have a look at the past questions and blogs to give you an idea of where to start ? or if you have been reading the site before coming to talk, perhaps point to an area that is of particular interest to you ?
I know how difficult it is to actually come out and spill the beans so to speak as only a few weeks ago I started to talk on this forum myself. I have been diagnosed for over 12 years now and this was the first time I had ever spoken to another person who had BD ! I was almost a complete recluse at home with my OH who is an absoloute angel and this site has really encouraged me to ask questions and speak out about my own experiences and symptoms.
Ya know what hun.....suddenly I don't feel so alone with the weight if the whole world on my shoulders so I really do understand if you are a little shy.
Could you please give us a little more info about yourself ? What question would you like to start with ? 
big hugs xx
I have had bechets for about 2 years, with sever mouth and vaginal ulcers. Every time I get a flare up I got prescribed prednisone and percocets which don't help for the pain. When in a flare up I get extremely tired and cranky. My mother also has bechetes. I don't take any medication regularly as I am too scared with the amount of prednisone I get everyti e and I still get a flare.
Ive had BD since 1998 its been a hard slog. But the only way to help ease the symptoms is medication! Im on colchicine for ulcers, prednisolone and a hell of alot of morphine which I wouldn't recommend as you end up feelng like a junky.....I was on thalidmide which made me just sleep. Is the gp/doctor your seeing for the BD undersanding of your symptoms????? I see Dr Carruthers at City Hospital who is really good.
It's really interesting that you and your mother have it as I'm the only one in mine, has she had it long?
Take care and stay strong
wens
My father and brother both had be and both have passed from aneurism at a young age as they had it really badly so as I have it I believe its genetic
I'm hoping for alternative to percocets pain medication.
Sounds like you have the nasty ulcers many of us (if not all because of the guys) get pretty regularly. I know from my own experiences that the pain and discomfort these flippin' things cause is totally frustrating and wears you down pretty quickly.
I am guessing that you have had a firm diagnosis from a BD expert as you are talking quite confidently about it unlike some of our friends on here who are completely tearing their hair out trying to get a full diagnosis on paper. Am I right in thinking this hun ? Who is managing your BD for you ? is it your GP or someone much more appropriate like a rhuematologist ?
You don't say where you are based. Is it in Uk or further afield as we have members as far away as Australia who speak virutally every day on here. As it's now 2.30 am, If you're in the UK like me, most of the group are probably asleep so you may not get really full answers and introductions until a few hours from now. I don't take pred. or perocets myself but i know quite a few of the group have or do get pred. and over the years have either loved it or hated it and moved onto other things so when they see your post I just know they are going to come and have a jolly good natter with you about it. sounds like they will be able to tell you much more along the lines of what you want to know but it is so nice to touch base with you myself even just to say hi. Oh....Hi by the way ! LOL.
I know it is quite unusual to have more than one person in the family with BD but there are some poeple on here in a similar boat and I think I saw someone with a couple of sisters who all suffer with it so maybe there is a bigger link than the professionals all think then? the one thing you will find once you find your feet talking on here is that all the misconceptions you have been lead to believe are true about the disease often get challanged by the actual experiences of members of this group. Having relatives with BD is just one of them.
I'm really sure that you're gonna find that you have an awful lot in common with quite a few of us on here and once you start learning from everyone elses experiences with medication and symptoms you will become much more of an expert at managing your own illness and start to get what you want from the professional teams instead of just accepting what you are given. This site is educational Hun....you will learn an awful lot from a lot of people and that in itself will make you so much more confident on taking control of your BD yourself and getting what YOU need to make it more comfortable for you. I have and since joining this site only a couple of months ago, I haven't looked back.
Until everyone else comes back on line (although there are some that will look in due to the different time spans in different countries) why don't you type in words that interest you like prednisone in the search box so you can link into previous blogs and questions that contain this link. I'm pretty sure you will find quite a bit of reading on the subjects that you are interested in before anyone else even wakes up. LOL. By the morning you will be an complete expert hun ! LOL.
As for myself, I need to get some sleep if I can (pretty bad wrist problem so should be resting it at night but couldn't resist a lovely chat with a new person such as yourself hun.)
So talk again really soon,
Happy reading for a couple of hours if you can't sleep and lovely to touch base and talk with you hun. Mwah !
big hugs xx
ps I take a huge range of medication as I am diabetic as well. For pain in particular I have tramadol and dihydracodiene which seems to work for me although everyone is different. I take anti inflammatories as well and this reduces the inflammation and so, in turn the pain reduces as well. Sometimes painkilliers in themselves just don't cut it and you need to go to the root of the problem and not just treat the end symptom if you know what I mean.
Congrats for reaching out. I have had Behcet's 10 years now & only recently started trying to communicate with others like me. I am a mystery (or annoyance) to most others I know. Viscous lidocaine rinse actually helps me more for the pain from oral lesions than percocet does sometimes. (Sometimes it can irritate it.) - I like Indomethacin antinflammatory medication twice a day, baby aspirin, & I take Lyrica about every 3rd day (it works great for pain but more often for me gives me mood symptoms & headaches - that's not true for everybody by a long shot). It's a great non-narcotic medication and one I used for years when staying off opiates was more important to me*. Tramadol also works very well, though I couldn't stick with it due to intense sweating. [*As I progressively lost function & had a young child to take care of alone, that became less my primary concern.]
Hi there, and welcome. I also suffer with server ulcers mouth, Vulva and preanal ulcers. For the mouth ulcers and sore throat difflam oral rinse is great I also use gelclair oral rinse which also reduces pain in my mouth. For the vulva ulcers I very rarely get a break and are difficult to treat as I am sure you all know that, however you could try emulsifying ointment this will help you get through the day it works by putting a barrier over your vulva ulcers it really helps me, I also have chenil spray for vulva ulcers stings somewhat but does reduce pain.
Colchicine and azorhiaprin does also help reduce flare ups but not with everyone. I am now on cellcept and colchine but struggling with cellcept as it
keeps making me ill with constant colds.
Don't be worried about asking questions on here most of our friends are very knowledgeable and can help answer some of your concerns.
Take care I hope you get the answers you need
Hugs sue xx
I too have a relative with BD my father who takes thaolidimide this seems to help a lot with ulcers ! I take azathioprine with moderate success the genital ulcers are worse and I am wating to see a uro -gynaecologist for my reapeated UTIs my GP has just taken heaps of blood tests and said apart from the BD I am completely healthy !!! that's a big comfort .....
Hi as a BD sufferer for Over 26 years I have picked up some useful tips along the way which may ease your pain a little. I have been hospitalised a few times due to dehydration because the mouth and throat ulcers were so bad I couldn't even take water or wet my lips without excruciating pain. I can' remember how but I discovered that the one thing I could use and swallow without pain and helping me to keep hydrated was.......wait for this.......CocaCola. A pharmacist friend of mine said he could understand why this would work and if it helps, then NO problem. Another good med is CLINIL steroid inhalers, sprays and creams. EXAMPLE. If you have mouth or vaginal/anal ulcers.....best to use immediately a flareup starts....puff inhaler on each ulcer or cluster about 3/4 times hold for a few seconds then blow out. Do this at least 4 times a day, decreasing as things get improve. Down below just a few puffs 4/5 times daily. The spay is good for the nose and cream for skin lesions. If you are lucky the flare will stop but otherwise it usually will not worsen. Hope this helps and let me know how you get on especially with the CocaCola.
Hugs
Billi
Hi and welcome. First I have to confess that I only skim read the above, so forgive any repeats. Regarding speaking to others, the Society have a helpline and also a list of support groups and people who want to get in touch with others in real time. You can register your own details as someone who wants to have their details shared with others. This is mainly for people in the UK, but they do have links and info about other Societies and there are members on here from places other than the UK who may be able to point you in the right direction.
This is a great place to hang out, but if you feel you also want some face to face, email or phone contact then the Society is a good place to start asking.
You can enter topics in the search box on the top right to find out more about your queries as well as posting them here. There are also factsheets on the Society website.
Finally, I usually point out to people in case they haven't noticed, that you can make your posts visable to members of this group only by selecting that option before you post. Otherwise they can be read by anyone and sometimes we don't want that to happen, particularly when posting about intimate and personal subjects.
Hi everyone,
Thank for your response. I forgot to mention my mother was diagnosed by a dermatologist in Calgary, she also gets the vaginal ulcers, it had actually attacked her brain causing a stroke. My aunt her sister also has behcets. Mostly mouth ulcers, for myself it's the vaginal ulcers that I seem to get most frequently currently I am on 50 mg, for 5 days then I will be tapering 9 pills for 4 days then 8 pills for 4 days and so on. I currently see a Rhuematologist in Toronto at sunnybrook hospital. I have tried various medication colchicine was by far the worst I threw up for days. I also found that Toradol did not help with pain what so ever. I had a pharmacist suggesting just going the herbal way and smoke a joint once in awhile which apparently has many benefits to autoimmune disorders. I am 24 and I have a small 3 Year old son. It was the pharmacist who suggested that I check out some forums to see what others do for pain management.
Hello,
My name is Jenna and I'm 25 yrs old-- I was diagnosed with Behcet's about 2 yrs ago;
I just wanted to let you know that I also live in Canada-- as most of the people on here seem to be from the UK, and mention the "society" and "centres of excellence" which cannot help us here (sigh... I really wish they could though..). I live in Manitoba, and here there is no place to go with this very rare disease. I was blessed to be finally diagnosed by a new rheumatologist-- but he has never treated anyone else with it (apparently I am the only known case here). He was able to diagnose me, but ultimately, he hasn't been able to treat it and help me-- I basically am left without any help now. We have an arthritis clinic at the Health Sciences Center, but I had already been seen for a year there, and no doctor could tell me what was wrong with me, and then in the end told me they couldn't help me anymore. So I await a new referral there, hoping that maybe with a diagnosis, someone will want to help me. My GP and endocrinologist (I also have Addison's Disease) have fought with Mb health several times to have me sent somewhere else like to Toronto for help, but they decline me every time.
Anyways, I really empathize with you about the pain-- this is my biggest struggle with this disease-- everything with Behcet's hurts me-- I don't know if everyone else is in as much severe pain constantly from it (I've had some people on here tell me that my username is not appropriate), but for me it is what it is. This disease has been nothing less than a battle for my life and constant struggle to feel some amount of comfort and normalcy once again (I don't remember what it feels like to not feel pain)-- so I didn't want to "sugar coat" what living with Behcet;s is like for me.
I remember reading somewhere that Behcet's is listed as one of the most painful chronic illnesses to live with-- I think I have to agree with that (at least that it is a very painful disease). Part of my problem also is that I have low cortisol levels (which is our body's natural stress hormone) from the Addison's and this definitely lowers my pain tolerance and increases inflammation throughout the body. I now suffer from seizures also because of the pain-- when the pain attacks become severe enough, my body cannot handle it and my blood pressure drops extremely low and I start going into a seizure. I am on around-the-clock pain management (it took me a very long time to find the right pain meds that work well enough but don't make me a zombie or act and feel all weird) and even with high amounts of pain meds on board, the pain I experience can still be excruciating-- I still end up in the emergency room often just because of the pain, which is definitely not fun or ideal.
I hope that you can find something that will help you and remember to keep fighting through-- things have to get better for those of us suffering from this disease.
Take care and best wishes
-Jenna
Mostly mouth ulcers for my aunt*. I get the vaginal ulcers most frequently. As you can imagine something simple as going to the bathroom is unbearable pain.
There are quite a few threads on tips for managing those ulcers, type it into the search box top right, you will see lots of things people have tried and what has worked for them. There is also a factsheet of suggested ulcer rememdies free on the website. Something that works for me is, if you have a shower, P in the shower, set the shower to gentle flow and warm, hold it so it is running over the affected area and P away!
Bathing that area with soluble steroid or soluble aspirin can help and gargling with it can help oral ulcers - don't swallow it, just gargle, swill round the mouth and spit it out.
Those are just a few of many many tips you can find on here, do have a look round, I'm sure will find something that is useful to you and your family.
There's also a thread listing medications, as well as threads about individual medications.
Please do be aware that any tips or advice given on this forum are NOT given by medical professionals, please consult your doctor if you have any concerns/before taking, stopping or changing any medication.
Yes, I find the warm water helps out a lot, however being at work I can't always just take a shower. I've been giving many creams and freezing agents for the ulcers which seems to worsen and irritate them.
in reply to Livingbechets
There is a portable wash thing you can buy and take out and about - I can't remember what it's called or the details, but many of us have one. I know there are links and chats about it on here. You'll need to search or hopefully someone will give you the details. I'm having a brain fluff day today so can't think of it.
xandii in reply to
It's called a portable or travel bidet. It takes a couple of the pencil size batteries and you fill it up with water from the tap, aim the selected nozzle at the area you want to clean and press the button. It will run for about a minute and collapses down to about 6" by 3" by3/4 inch and you can carry it around in the pouch provided in most sized handbags.
I have used one for several years and there are several different ones on the market which all cost around £20 - £25 on sites like ebay and amazon. Mine also has a nozzle that is used for full vaginal douching which can be very sooting with the ulcers you have described. DO NOT add anything to the water like TCP. I did once and the claw marks are still clearly visible on the bathroom ceiling. 
You can also get a spray that can be fixed to the back water pipe of the toilet at home pretty easily which is called a wudu spray and does the same thing but with a little more force. I have one fitted in each of my 3 bathrooms at home and they cost around £10 each.
Hope that helps.
big hugs xx
Has anyone ever used or been prescribed nabolina?
Nabilone**
I use loriderm to soothe inflammation and I find it good.
If you put the word Bidet in the top right hand search box someone sourced a portable bidet for use on the move.
Not sure how wasy it would be to use at work but may be worth considering.
Jill xx
Ah, thanks Jill, that's what I meant earlier, a portable bidet, just couldn't think what it was called. I've had a look for the thread now :
Our daughter is 20, has your exact symptoms. She was BEYOND miserable and in so much pain, 2 percocets every 6 hours didn't help the pain. She lost 10 pounds and ended up in the hosp twice. She could only pee in oatmeal filled tub water. She was misdiagnosed of course with Herpes type 1 systemic for years and on high dose steroids which were only a bandaid.
She is now seeing a specialist in NYC and has been on Plaquenil 2 tabs every day along with Minocin (tetracycline antibiotic) 1 tab every day from her dermatologist, and between the two, she is now in FULL remission and feeling great. took a while to kick in, but worth it.
She could not tolerate Colchicine, made her extremely! dizzy, didn't do much anyways. Good luck. Give it a try, both are fairly benign medications.
This disease is a nightmare. I think miserable is an understand statement, I have a 3 year old son, so I don't get much rest. It's insulting they assume that any vaginal ulcer is herpes, they tested me 4 times at the hospital after I told them my mom had behcets, I was then admitted to the hospital for 2 weeks on Morphine, seen by about 7 different doctors known of whom knew nothing about behcets. I get extreme fatigue, but its the ulcers that kill me. I don't want to be on medication my whole life. I just need some different advice on help for pain, percocets do absolutely nothing, I have to call my doctor back to see if she can give me something else.
I found that Percocet did hardly anything for the pain, but did a lot in making me act all crazy and feel beyond strange-- I was running around with a laundry basket on my head and yelling "ouch! I hurt!"-- not exactly a good thing! After a good while of trial and error, they finally tried me on something called Dilaudid in the hospital. It's a very strong/potent narcotic, but I found that it was the first thing that truly helped ease some of the pain and also didn't play on my brain too much. It's also called Hydromorphone-- this is what I have been taking now for a while and it does help to increase pain tolerance and allows me to at least function and not be bed-ridden due to the painkiller. (now I'm just bed ridden because of this stupid disease!). This might be something that you could bring up to your doctor. It comes in both long-acting forms and in short-acting forms, and can also be given through I.V in the hospital, which I like because I don't want to be switching between different pain meds if I'm hopsitalized.
Can you private message me? I have had hydromorphone before short and long acting after I got it of the hospital, morphine in a pill basically.
hello and welcome to this community i think you will find as i did and still do a great understanding and knowledge base from all the BD sufferers here.it took great courage to post and i congradulate you on that but i think you will discover as i have it will be one of the best things you will ever do.as a BD merchant myself only diagnosed last september but sick for 8 years i can totally understand your frustration regarding meds diagnosis etc.as a man i also get ulcers mouth throat tongue and also down below and i was also told i had herpes what a bunch of idiots how wrong they were and its only when i was diagnosed the doctors started to treat them and the other countless symptoms with oral steroids and all types of cocktails including colchicene which never helped at all.the steroids have helped to control the ulcers but they bring their own problems but as i have found Bechets is a balancing act with meds at present i have been on pred 35mgs per day up to 50mgs when i get flares which is pretty often so now they are trying me with humira injections weekly plus a bucket load of other meds to try and settle down the flares and reduce the steroids i also take difene 75mgs for the pain but i only take those when i cant handle the pain.all i can say is that if you need the meds take them as i have already said you are between a rock and a hard place and you will hopefully find the right cocktail for you,one thing is for sure you are not alone and will never be short of support as all those on this forum are as we are all trying to find solutions and live as normal a life as BD will allow so keep fighting and never give up and remember together we are strong
regards Chris
Dear Jenna,
It is awful to hear that you are in such terrible pain all the time. I have been very lucky to be diagnosed as soon as I had symptoms and have a good team of docs. The pain team have me on working group of medications. I have patches of fentanyl ( 125 micrograms) and breakthrough 30mg of liquid morphine. When I am in hospital they often use a ketamine infusion until they get the inflammation under better control.
I also have seizures and currently taking keppra, tegretol and vimpat. After my last admission they have also given me clonazapan drops to bide time to get to a medical facility as I stop breathing when I have a seizure as I often start with myoclonic jerks that luckily those around me notice as I am not aware.
I hope you have seen a pain team Jenna as I found their help wonderful.
The other thing to remember there is always someone worse off than we are!
Good luck managing your pain.
Felicity
Hello felicity,
I am sorry if it seemed as though I was being bitter or feeling sorry for myself-- I didn't mean for my post to come across that way. I know that I'm not the only one who is in pain, I was just explaining that for me, the pain is my biggest issue with my disease. I can probably list off about five pages of other symptoms/ problems/ conditions I have experienced or continue to because of the Behcet's, but the sheer amount of pain that I experience on a daily basis is the one that I have trouble with. I know that others are in the same boat as me, or worse off.. and that's why I really feel for them and want to reach out. I know that we all suffer some degree of anguish and have to deal with cruel and undeserved issues that this nasty disease bestows upon us-- I wasn't trying to make myself seem as though I am the only one suffering.
Hi Jenna,
I didn't mean to make my reply to sound like that. I thought I was offering a suggestion with contacting the pain team and letting you know what has worked for me.
I find that thinking there is always someone worse off helps me get through the bad patches not implying that you are feeling sorry for yourself.
Sorry for the misunderstanding.
Felicity
Hi Jenna,
I didn't mean to make my reply to sound like that. I thought I was offering a suggestion with contacting the pain team and letting you know what has worked for me.
I find that thinking there is always someone worse off helps me get through the bad patches not implying that you are feeling sorry for yourself.
Sorry for the misunderstanding.
Felicity
Dear felicity,
I am so sorry-- I am the one that had the misunderstanding! I don't know what got into me and why I thought you were attacking me. I re-read your response and I really have no idea how or why I took it so negatively. You were simply offering me helpful and supportive advice. I think I must've been in one of my "down" moods when I read it and replied.
Thank you very much for reminding me that the best thing to do is always remember others being worse off-- because it is so true and helps to put your own situation into perspective. I truly believe that there is always something positive within a negative or bad situation. For example-- I work a couple of hours a week in a nursing care home, and if it hadn't been for having this disease, I wouldn't be able to truly empathize and understand my resident's pain (physical and emotional), loneliness, frustrations, even embarrassment, etc. I am able to have a special connection with each of them that the other care workers are unable to. Ultimately this helps keep me going because I love helping others, and want to be a nurse so badly (which can still happen one day when I beat this beast to the ground!).
Anyways, I am very sorry, felicity for jumping on you so bluntly. I hope that everything is going well for you and hope that you are feeling much stronger since being out of the hospital
Take care
-jenna
Not what you're looking for?
You may also like...
What do the gential sores/lesions feel/look like (female)?
My symptoms all flared up hard core 3 months ago, at first they thought I had trench mouth so I was...
