behcets

Hi everyone, I'm new here, I've been told this week that i have behcets. From the age of 14 since having glandular fever I've been ill, I was diagnosed with fibromyalgia but as the years went on I knew there was something else. I was just wondering how you feel or know when you're going to have a flare up or a flare of Ulcers is there any warning signs that you are getting one? I know everyone is different but it would just be nice to get some information as information seems quite limited when it comes to actual patient experiences. Thank you :)

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  • Hi and welcome.  Like most autoimmune diseases we have the same named disease but we all react differently to the symptoms and medications.  I usually feel very tired and a bit of a fever before the big symptoms.  The best medicine for me was Colchicine but some others couldn't cope with it as all meds have side effects, it's trial and error and balancing the side effects against symptoms.   Now having said all this you need to know that there is life with Behcets.

    I have suffered with it for over 30 years but still mamged to work at least part time for some of the time, have 2 more children, divorce and happily remarried.  You need to be strong, positive and accepting of the disease and then you can build up to coping with it, really quite well.  I hope this helps you and if you need more info try

    behcets society.org.uk

    Or you message me privately.

    Hugs

    Billi

  • Ah thanks so much billi :) to be honest I've known for years there was something not right, I kept telling the doctor but they just kept putting things down to fibromyalgia which I knew it wasn't. It was a bit like closure to finally find out that I wasn't crazy. I'm doing a degree at the minute and I've had quite a lot of time off I'm in my last year now but I know even the teachers at uni were thinking I was just staying off for the sake of it which is wasn't. It's been tough at uni very tough with the symptoms. I've had the symptoms for so long with just paracetamol and codeine to help. However I started getting a bit further forward when just before Christmas I went to the eye infirmary with visual disturbances which was down to a migraine (which I always get), however they found that I had retinal vasculitis completely by accident and then I got sent to a rheumatologist who said he thought it was behcets straight away because I get mouth Ulcers, other Ulcers, skin problems, head aches, joint pain, pelvic pain everything I wee, Ibs symptoms etc. Can I ask a personal question to anyone? With the downstairs Ulcers do you know when you are going to get one are there any warning signs? I haven't had them very often but when I did get them I got so worried and got tested 3 times for herpes etc. And all the tests came back clear and they said it might just be when I feel a bit run down but I knew it was something more x

  • Hi again.   Yes it is a relief to get a diagnosis, it took over 12 years for me, but things have improved immensely in diagnosis, knowledge and research.   Also the society who have given us this site and the Centres of Excellence and are funding research.  I would urge you to look at the site for all kinds of info and advice and maybe become a member.

    As to ulcers down below I think we all know when we are going to have a flare, tired, temperature, lethargy and if not a definitive ulcer an itch or slight lump.  The sooner we treat them the better.  Lots of us find a CLENIL inhaler useful, at the onset a few puffs on the area 3/4 times daily usually stops a flare and rest.  Do this for about 7/10days reducing puffs as they get better.  Also wear loose fitting cotton only underwear, no tight trousers and dab with a soft cloth and warm water only.  This also applies to anal ulcers, mouth and nasal.  My best advice is......accept the disease, stay positive and strong, don't let it rule you life but listen to your body.  Rest when you need to, enjoy good days and don't go overboard with activities even good days need some rest and try not to stress or worry.  Hope this all helps.

    Billi

  • Hi there

    I tend to get mostly really big serious flares, followed by long periods of remission.  The six or seven times I have ended up in hospital, it was preceded by extreme nausea. 

    The times I have had smaller flares, I just feel generally unwell and lethargic.  I also tend to get at least two things happening at the same time; my knee swells up and I start getting floaters and blurring in my eye, etc. 

  • Thank you x

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