Behcet's disease (20 year old female)

[lauren92]

Hi, I'm new to this posting but I'm 20 and got diagnosed with this disease about 5 months ago after suffering a cerebral venous sinus thrombosis in September last year. This led me to be hospitalised as I suffered complete left sided paralysis as a result of the thrombosis. I have always had mouth ulcers and some of them are really large as well as occasional genital ulcers. Before this I was really active, playing hockey 3 times a week and going to the gym, never smoked or taken drugs, don't drink and eat healthily.

They are trying me out on different medications and currently I am only on colchicine daily as an anti-inflammatory but it doesn't seem to be reducing the ulcers. I was on warfarin for 6 months after the stroke.

I also experience shooting pains in my fingers and back and sometimes down my legs. Are these symptoms of the disease?

Does anyone else know what other medications there are? I am being transferred from specialist to specialist amongst all the London hospitals and yet to find one who can come up with a suitable medication to control my symptoms.

Also is this disease likely to get worse as I get older does anyone know?

[Hidden]

Hi Lauren92,

So sorry to hear you experiencing such pain and discomfort at the moment. As you have mentioned you are newly diagnosed and being transferred from specialist to specialist in London, I wonder if you've yet to be referred to the Behcet's Syndrome London Centre of Excellence? It's a great clinic, where you would see various specialist consultants and clinicians under one roof, during one appointment. It's interdisciplinary, meaning they work together to find you the best possible treatment for your condition and continue to provide you with follow up appointments. If you'd like more information please message me and I will send it out to you by email. Also, If you are living in or near London and would like to join us for our first official London Support Group, I can send you that information too. It should be a great opportunity to meet others who are also living with Behcets.

Best wishes to you!

jean

[billi]

Hi Lauren so sorry for your pain and hopefully a good med and treatment will be found.

I am writing to you as a long suffering patient of BD....27 years. It took me 12 years to get a diagnosis and another 3 years to find the best treatment for me. But believe me there has been vast improvement since the 80's. Centre of Excellence hospitals, more knowledgable doctors, better meds etc etc. I too was eventually treated with Colchicine and manged to keep on it for 7 years during which time I had practically no symptoms and hardly any pain and also pretty well for 3 years after stopping it. Sadly over the last 3 years BD has crept back into my life and I am having to find ways to cope again. Does it go away.....very rarely , can we learn to live with it....MOST Definitely with the right docs and meds. Whilst suffering I had 2 beautiful children, went back to the job I loved and travelled a lot. So please be strong and determined, try to look on the bright side, rest completely when YOU need it and don't let the disease become your be all. There is life, bad days and even better good days. I do hope you have family support and they help but encourage as and when you need either.

Take care, keep smiling on

Hugs

Billi xx

[Hidden]

Hi and a very warm welcome to you.

Excellent advice above, particularly about the Centre of Excellence. Meanwhile, here are a couple of links that might interest you. behcets.org.uk/wp-content/u...

behcets.org.uk/wp-content/u... .

If you would like to see if any of the things you are concerned about or interested in have been discussed on this forum, type a key word (eg ulcers) into the search box on the top right of this page.

Regarding your question is it likely to get worse as you get older – no one will be able to tell you that, but we can tell you that remission is possible, and with the right medication and management it is possible to lead a normal life within the context of the disease. Bear in mind that you are unlikely to get all the symptoms listed. Type of symptoms, degree of symptoms and treatment vary from patient to patient.

It can take a while to find the right Medication and management programme to suit.

[lauren92]

Thank you for all of your responses. Thankfully I don't think my symptoms are too severe and hopefully they will stay that way. At the moment I am under a neurology specialist in Behcets at the Royal Free Hospital in London but think he is going to refer me but not sure where to yet. Will find out at my appointment in 2 weeks time. I do live near London in Surrey so I would be interested in the London support group.

I'm just hoping it doesn't get to the stage to interfere with what I love doing. I'm a student nurse at the moment and I love every minute of it but unfortunately it is very intense and doesn't always give me the time to rest when I need to but the tutors are aware of my situation and are very good. I also have a very supportive family and with my mum also being a nurse this is very helpful. So I am in a good place to start with! I will definitely have a look at that website and try and find out more about Behcets and take it from there

Thank you again for all your suggestions and I guess its just going to take time to work out the best treatment for me and learning about flare ups etc.

[Zebra]

Lauren if you are on Facebook message me here and I will link you in with other students and our active community there too. There is also a BSS support group for Surrey which Alison Pemberton runs.

[lauren92 in reply to Zebra]

Thank you. How should I find you on Facebook?