Bechet Disease

[Bechetdiagnosed]

Newly diagnosed.

Has anyone else got this disease?

Is it normal not be be referred to the specialist centres? My consultant wants to wait and see if he can manage my symptoms before referring me.

At the moment I’m experiencing ulceration but what else could happen to me?

[Stopyourhavering]

There's a really good online support group via Facebook linked to the vasculitis website
www.vasculitis.org.uk
Vasculitis support (UK) is the Facebook page which is a closed group and extremely useful
I've recently been diagnosed with (leucocytoclastic vasculitis and found a load of really useful info on both sites and been able to talk with others with this disease
I'm currently on high dose steroids and just started Methotrexate
There are so many variants of this rare disease that it can be quite overwhelming
I haven't been referred to a specialist centre either, but being treated at my local hospital, although I've got contact details of specialist centre if things don't go to plan
Good luck

[Bechetdiagnosed]

Had a read through that link. Thank you.

I am not on Facebook unfortunately.

I’m still in the throes of thinking the doctor is mistaken in diagnosing me because it is so rare. But I have all the main symptoms. I suppose I’m in slight shock.

Sorry to hear you are experiencing health worries too. Thanks for replying.

[bluetea]

Hi, I also have bechets. It took years to get my diagnosis. I suffer with tummy trouble, arthritis, and painful ulcers. I try to manage mine with diet and keeping life as stress free as possible. Easier said than done! I haven't had a bad flare up for about a year now. Always up for a chat x

[Bechetdiagnosed]

Hi Bluetea!

Sorry to hear you have Bechets too.

I’m currently in a very stressful job and I am experiencing constant flare ups. I’m getting genital ulcers every two weeks and the mouth ulcers are relentless. I’m hoping to change jobs in the summer though, to try and reduce my stress levels.

How do you manage your Bechets?