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Behçet's UK
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New to Behçet’s

Hi all! I am new to this forum and new to Behçet’s - just diagnosed two weeks ago. I’ve done a lot of digging online and don’t find much but the same information over and over. I’m hoping people here can share their stories so I know what to expect. I was diagnosed with Uveitis a few years back, then this last March I woke up with about 30 mouth sores that wouldn’t and still haven’t gone away. Then this weird looking rash started on my legs and has continued to grow - red/purplish dots. I went to the doc who sent me to a dermatologist who biopsied my mouth and my legs but didn’t find any cancer or herpes so I got Behçet’s and a trip to the rheumatologist who confirmed it. One thing I want to know is does anyone else get headaches for a week or two at a time which nothing helps? Or get really clumsy? I’m really annoyed with the headaches but the mouth sores are out of this world with pain. The doc gave me plain steroids to take and I know there has to be a better drug out there. These things are killing me and I have never been able to take them. Told the doc this but he said it would be fine. I will quit taking them soon. I also know that there are different types of Behcet’s, but how many? I could go on and on but I don’t want to go on too long - any information would be wonderful and greatly appreciated!

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I was diagnosed at the London COE and the professor told me there is 6 different types. I was given some medication that I have to mix and gargle around my mouth and throat for two minutes and then don’t eat or drink for an hour after. I haven’t had any mouth sores or ulcers now for 5 weeks, that’s the longest I have gone. I still get lumps and patches on my skin and headaches that last for ages. I take Colchicine currently and am waiting to see Rhematology about my pains.

Hope this helps

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Thank you so much for sharing with me. It’s good to know I’m not the only one out there who has mouth sores that last forever and who gets headaches constantly. It’s awesome you have a mouthwash that gets rid of the sores. I’m jealous! I hope my doc gives me something for permanent type relief when I see him next week. Meantime I use coconut oil for mouthwash along with a mouthwash my doc gave me that gives me temporary relief through numbness! I’m so sick of all of this pain. I’m having an ‘I’m really sick of this’ day.

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I have suffered with Behcet’s for the last 43 years, diagnosed 7 years ago when I had terrible ulcers below. A very long journey. I would suggest that you keep a diary of every thing that you eat and drink and also take pictures of rashes lumps bumps anything that you get. The problem is by the time you get referred most symptoms have disappeared so it’s a good way of showing the doctor. I suffered terrible mouth ulcers for months on end. I use a natural toothpaste by the Greenpeople which is really good haven’t had ulcers now for years. I also wash clothes in a natural washing liquid, I don’t use soap, shampoo totally natural from the Greenpeople as I had a rash on my scalp which ordinary shampoo irritated. Coconut for skin is very soothing. Lots of food irritates me (IBS) so never eat processed food if possible all meals cooked from scratch with organic veg/ meat whatever is available. We have a small holding so it is easier for us to grow stuff. I don’t drink much alcohol as this irritates my skin and gives me terrible headaches. I also stopped coffee and milk as this has the same affect also chocolate. I never eat the same thing 2 days in a row otherwise I feel tired and not right in myself. Not ill just off colour. You need to listen to your body as it does react to different foods and drink. I also have joint pain which I take vegetarian flax/linseed oil daily this helps and I am also vitamin D deficient which I take daily. I don’t sleep well at night going days when I only have a few hours which doesn’t help but I have now learnt to cope with this and not get agitated. When I am exhausted I sleep I used to feel guilty about this but it really is a case of that’s what I need and it works. Hope this helps. There are lots of people on here willing to help. What you need to do is read as much as you can then try things and see what’s best for you. We are all different and what works for one may not work for another. Keep an open mind and keep moving forward. All the best xx

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I relate to so much of what you say. I think I have had it for the better part of my life the more I learn. I don’t sleep, it’s interrupted an I just don’t fall asleep. Tiredness has been with me since high school. I’ve been taking pictures of my rashes - my doc wanted to give me prednisone before I saw the rheumatologist and I didn’t take it because I wanted him to see what was going on. I suffered, but he saw my sores, rashes and everything else going on. I get sore joints, pain in my kidneys, headaches on and off all day continuously. I’m going to change my diet - just don’t know how to start. It is so overwhelming with everything else. I quit alcohol years ago because it felt like I wanted to die when I would drink it. I could go on - but as far as I’ve come I feel like I have so much further to go. I like the idea of keeping a food log. And even adding a pain or problem log. Thanks for the ideas. It helps so much!

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Just focus on one thing at a time, better to have one thing that works than lots of things that don’t. It is all very overwhelming I know but it does it better and you have to make the most of those times. When I get down I give myself a good talking too. So many are worse off than me and I have to appreciate what I have. All the best xx

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Thank you - xx

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Hi, I’ve only been diagnosed this year & found health unlocked such a great resource considering the condition is rare. In terms of the ulcers, I had awful oral ulceration that nothing would settle. The triple mouthwash they prescribe is a mix of a steroid, anti biotics & anti malarial I believe and it’s the only thing that took the pain away for me. They call it ‘magic mouthwash’. I get horrendous migraines that are aggravated by neck pain & hormones. I’ve been taking imigran for years & have tried nortriptyline & am about to go on beta blockers. For me, a nerve block is also a possible. Nothing showed on mris. Colchicine also simmered my symptoms down dramatically, including the ulceration. Anyhow other Behcets patients here are really helpful as are Behcets uk, so if you haven’t been referred to one of the centres of excellence in Liverpool, Birmingham or London I would ask. My Behcets was described as mucotaneous so potentially a reasonable prognosis. So wishing you well & hope this helps. Best wishes

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I am going to see if my doc will change my mouthwash into a mix of a steroid, antibiotic and an anti malarial and see what she thinks. That sounds like a great idea! I was just put on Colchicine yesterday, but I have to stop taking my cholesterol medications due to interactions. Have to check with my doc to see if there is an alternative to that. Thanks so much for your input!

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I just started getting headaches too. They are not like any headaches I normally get where I take Advil or something and they go away. They come and go throughout the day. When they started a few weeks back they were constant. Then as my other symptoms got a little better they would come and go throughout the day. I’m glad I found this site - to get advice on what medications are out there, what people experiences are and just the emotional support is so uplifting.

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I haven’t been diagnosed as of yet, I get headaches and have stiffness in my neck, mouth ulcers and have had ulcers down below. Been for years that I have reoccurring shingles. Often can’t lay flat my head down flat on a pillow or on my left side due to pain. Have bouts of tummy pain. Joint pain and would often have itching skin (legs) when I walked for a distance. Couldn’t stand being in rain and cold without aching.

I started colchicine end of July and see some differences.

I am curious you mentioned 6 different types? I had never heard of this before.. could you share what you have been told?

I know there is neuro Bechet’s..

thank you,

This site has been very helpful everyone is so kind and uplifting..

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Someone had mentioned to me that there were six different types but my Rheumatologist hadn’t heard of that. I would really like to know too.

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a Magic Mouthwash Prescription:

viscous lidocaine 2%

Maalox.

diphenhydramine 12.5 mg per 5 ml elixir.(Benadryl)

It’s soothing for you mouth ulcers.

I found switching my toothpaste helped too, I went to a natural brand

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I started with one knee swelling. Then uveitis in both eyes with ulcers in my intestines. Then erythema nodosum skin lesions. For 20 years I researched and sought best physicians. I travel to nyu langone rheum as well as my local rheum and retina docs. Rituxan infusions along with daily Revlimid has changed my life. Keep a journal. Don't settle. You will find the combo of treatments that work for you.

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I was thinking about a journal. I had collected my medical records and I’m going over my past I can tell I’ve had this for some time. Thanks for the advice - I like the ideas you have!

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Best advice I received from this forum was to keep a journal anytime I’m having an outbreak and I take pictures. I think that helps and also keeps track of how your outbreak move. My outbreak seem to be head, facial, eyes , gut, repeat. The facial pain is always there my neurologist is working on keeping that pain tolerable.

I’m trying to figure out the vascular connection.

My rheumatologist says the colchicine is for mouth ulcers and facial nodules like (exceptthebest has mentioned) actually made up a binder with all my information-organized by doctors I see or have seen. A section for symptoms.

(I have been somewhat obsessive about it)

But I think it’s helpful when I go to appts.

It has all my chart notes/account summary/tests-MRI results, bloodwork etc

I’m trying to figure out the vascular connection. My rheumatologist says the colchicine is for mouth ulcers and facial nodules like (exceptthebest has mentioned)

Does anyone take colchicine for there vasculitis??

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I take Colchicine. My rheumatologist told me that Behçet’s is a vasculitis and said it affects both smalll and large veins and arteries. How that plays into aphthous ulcers is a mystery to me. I understand the rashes I get on my legs being part of vasulitis, but genital ulcers too? I need to do more reading. The Colchicine has really helped my joint pain and the rash - but only a little for my aphthous ulcers. I wish it would take my brain fog away too!

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Thank you,

Did your legs ever itch when you walked long distances?

Mine almost felt like I had the Heebie-jeebies (ha-ha)

Are you cold to the bone in rainy cold weather?

My rheumatologist told me to take a allergy pill to take the itching away I have been on them before and it’s never changed so I just took the colchicine and it’s been better.

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