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Behçet's UK
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Medication: diagnosed 6 years ago but I'm still struggling to find one that helps.

I'm not too sure that my consultant knows what to try now. My last appointment he asked me what I wanted to try!!!! I'm feeling very down, I have not been ulcer free since last July. Ulcers that prohibited me to eat properly and sitting down can be very uncomfortable

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Sorry to hear your still struggling, I really hope they find something to help you soon!!

My rheumatologist has been prescribing me something called Instillagel, you rub it on the ulcers in your mouth and get instant relief for around 2-5 minutes, I don't know if this may give you relief to help you eat? And if you suffer with genital ulcers you may be able to apply their??

I know it's not getting to the root of the cause but just to have that relief for 5minutes feels amazing!! I like yourself couldn't eat, my weight went to just under 7stone now I'm back to 9 stone and feel a lot healthier!

Fingers crossed for you :)

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Hi, thank you. I do use instillagel like you, but as you say it only takes the edge off the pain for a few minutes. When the pain is unbearable not even taking oramorph takes it away for me.

I'm pleased to hear that you have regained your weight, there's nothing more torturous than watching people eat and you can't. My GP prescribed me a drink called forty sips which has 300 calories in, a few of them them a day helped me not loose anymore more weight!!!

Take care x

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Hi yep I know just how it feels when doctors ask what should we do and what do we want. I actually asked a consultant when I had been taken to A&E and was told that these are the rules now, the patient has to more or less demand a scan or X-ray better meds etc because too many people have been given too much on the NHS and this is to help costs and cover them and their departments to keep in budget.....I'm not joking.

Anyway are you in the UK and if so you need your GP to get you a referral to a Centre of Excellence either in London, Birmingham or Liverpool. As for meds you did not say what you are taking just now and exactly which symptoms you have. For ulcers you could try a CLENIL inhaler and spray good for mouth, nose and below. Just a few puffs or one spray on each area 3/5 times daily reducing as things get better. Only available on prescription from your GP. Also so that you do not get too dehydrated most of us find comfort in CocCola. It soothes and there is no pain in swallowing and at least it gives helps with hydration. Do have a definite diagnosis of Behcets and if so your consultant should know which meds to give you. So sorry you are having these problems but believe me we are all in the same boat so to speak even after years of suffering. This is why this site is so invaluable to many people with rare illnesses and weRe all here to help each other as much as we can.

Hugs and Smiles

Billi

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Hi billi, yes I'm in the uk but unfortunately these centres are far away from me, the nearest one would take about 2/3 hours to drive to. I've been injecting methotrexate weekly and dissolving betamethasone tablets to use as a mouth wash. I was becoming so ill before Christmas, that the hospital gave me a steroid injection so that the ulcers would clear and I'd me able to eat over the Christmas period, the injection only worked for a week (it usually lasts for about 2 weeks). So I wasn't able to eat properly and enjoy the festive break with my family. The ulcers were so bad, the worst id ever had. I decided myself to stop injecting as one of the side effects of methotrexate are mouth ulcers. Luckily since stopping, the ulcers have reduced. The consultant wants me to now start on neoral. I'm feeling confused and just want the drug that works!!! X

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My nearest centre is about a 3 hour drive away but I can honestly say it is totally worth it for me. Prior to the referral I was having to travel that distance at least every month anyway to see different specialists at different locations and now it's 6 monthly because they are under the same roof. Perhaps an initial appointment would be useful - info can be passed back to your primary carer who can carry out any recommendations. Once you have been assessed and contact made between the Centre and your Specialist communication can be ongoing without you having to travel to the Centre regularly.

A further thought about treatment - it can take a long time to find a regime that suits you and it's not unusual to change meds over time, just as the course of your illness can change.

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Hi, thank you. I'm going to ask my consultant again. I was attending a centre in Leeds as well as my hospital, but that stopped due to funding. I suppose after 6 years of various meds I thought that I'd be under control now. The only one that's seemed to work, was a high dosage of daily steroids, but they took them off me after two years, saying that I shouldn't have them anymore due to the length of time and they were giving me horrid stomach pains. X

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It may help if you get in touch with the Centre nearest to you and ask for their advice about a referral - I believe your GP can do it and funding is not the same as it is with 'usual' referrals, so it shouldn't be an issue, but I'm not an expert. The support worker at whichever CofE is closest to you will be able to tell you much more.

I don't know if you've seen the Society factsheet about treatments, it might be of interest to you - behcets.org.uk/wp-content/u...

Sometimes it's a case of finding a combination that suits you according to how you are at a given time as well as 'maintenance' treatment. I believe some patients take steroids all the time, while others take them at specific times, or not at all - it depends on the patient and that's why you really need to be seeing an expert (or two/three/four!) who can monitor and help you to manage your symptoms over time, either by seeing you regularly or by communicating with your local medic/combination of both.

Basically, I'm saying don't despair, there ARE options out there for you, but sometimes you have to seek them out yourself.

You can find lots of treatment and management tips here too but do please always bear in mind that none of us are medics, we are simply a community of lovely people who care and share!

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(and some of us are a bit bonkers ;-) *whistles innocently*) xx

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Ha, ha thanks x

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Hi, really can understand your frustration. I treat my ulcers with propolis, it's the stuff bees produce to protect their hives from bacteria. I find it very helpful and put it on straight away with the first signs. Just be careful it won't come of if you get some on your clothes. Also chamomile tea is very healing and soothing. Hope you are getting better soon and find something that works for you.

X hannah

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I also use propolis in liquid form which you can mix with water and use to gargle, spray or douce the mouth, nose and down below [just about anywhere]. Brilliant stuff and you can get a mouth spray which gets right down to the throat along with toothpaste as well.

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Hi josa, I've never heard of propolis before, I'm going to contact the doctor and ask for it.

Thank you x

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Not sure you'll get it on prescription. They sell it in health shops and Holland and Barrett. Let me know if you are successful with the prescription. X

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Hi, I'll go to tomorrow and buy some!

Thank you x

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Hi,

Regarding the ulcers, you might find this useful:

healthunlocked.com/behcetsu...

You can use the search box on the top right to look for previous discussions on the things you mention and do have a look at the Society website if you haven't already done so, there is a wealth of information and support available there.

In case you don't know, anyone, anywhere can read your posts. If you don't want this to be so, then you can choose to make them private (viewable only by members of this group) before you post. If you are talking about something particularly personal you may find you get more responses to a private post. :-)

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Hi, Thank you for the advice. I can't believe how helpful everyone is, I've felt really isolated not talking to other people with the condition. I feel uplifted, reading about others and knowing that their advice is firsthand. Years and years of dealing with my problems are understood. Family and friends who are supporting can't really empathise and can't give true advice. Thank you xx

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Hi Winnifred

I live over 200 miles from a centre of excellence but still go to one

i go by train and the centres can arrange for you to stay night before in hospital visitor accomadation ( i usually stay with my on).

if you can - go tone and they can then liaiase with your local consultants so you do not have to have all your care from there.

They are helping me so much at present and also are so understadning and reassuring that things can be made at least more comfortable if not cured.

Regards,

Sarah

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Thank you Sarah, that's an amazing service. Thank you for this advice, I'm going to ask about this xxx

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Do you have the beclometasone (becotide) spray as well as the mouthwash? It's an inhaler but you spray it on the ulcers, it works well due to it being steroid-based. I agree with the other posts, a referral to one of the centres sounds extremely beneficial if your consultant is stumped as to what to try next. Has he/she not considered biological medicationa like humira or infliximab? xx

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Hi, been suffering as well the last 7 years and symptom always getting worse,I had my share of ulcer from mouth to rectum. Could not eat swallow eat, always not in the mood, I tried all kind of stuff, pain killer magic mouth wash and the blabla. One thing work for me but it's painfull for a good 5 to10 sec +-, after you will be able to eat a good meal, their is no health issue if you are not allergic to alcool (the one you drink, ex:vodka, wisky) NEVER PHARMATICAL ALCOOL , I suggest to not go higher than 40% more might just be more painfull with same result, remember the 5 to 10 sec pain, BTW my doctor told me there is no danger it's just a bit crazy, take a 1/4 once of your favorite alcool, you can even buy small size bottle of 2-3 onces if you dont drink allcool

The idea is to mouthwash like you do with" EX scope"just a few second , when I had some ulcer in my throat I was swallowing but that is up to you, SO spit it up or not and hold on for a few sec, you will be pain free after the alcool did it's effect, I was so happy to eat after, it worth the few sec of pain. 1/4 ONCE is not much but for driving you should check your state law specially if you have swallow.Their is also the possibility of interaction with medication again if you swallow it. IF YOU HAVE never drink alcool don't try this, I been using throat pain bottle spray, its cheap, better than a lot of things I tried, but again their is a maximum dosage recommended by the manufacturer, I personally never had symptoms using it way more then the recommandation, this is up to you.

I hope that my post will help other people ad well , feel free to ask any question , IM NOT A DOCTOR , just a guy who couldn't stand not eating.My familly was relief to see me smilling and be less in a bad mood.

I suffer behcet, and ulcerous colite I take salofalk, imuran, colchicine, prednisone, plaquenil and many more, statex 20 mg (morphine) for the pain + depression treatment for a total of about 45 pills a day split 4 time a day. Life is tough!I! My symptom have escalate with no regression since the beggining . Anyway sorry for spelling error im french english is not my primary language.

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