Diagnosed with Behcets yesterday, confused and frightened.

[SarahW1]

Hi all,

After 10 years of suffering from migraines, swollen joints, aches, oral ulcers and more recently genital ulcers and diminished vision a professor of Rheumatology has diagnosed Behcets.

He gave me a leaflet to read and has prescribed 60mg of Prednisolone, calcium tablets with vitamin d and myclophenalate. I'm so confused about all of this, I don't understand the terms they are using, the names of the drugs or what happens going forward?

I'm also seeing an eye specialist, after a florescine eye test it shows I have seriously reduce blood flow at the back of my eyes, the consultant mentioned vasculitis but then he was talking about uveitis ?? Are they the same, different or part of Behcets?

Anything anyone can do to explain any of this including what happens moving forward with Behcets would be greatly appreciated.

X

[UKADMIN Partner Behcet's Syndrome Society]

The Behcets Syndrome Society website behcets.org.uk has information sheets all about the disease and how it affects people, or send an email to [e-mail]. Also why not join the Society to get all the latest information. The helpline 0845 1307329 is available for all and is manned by Behcets patients

[diyar99]

hi i am sorry abut dignosisis but i have sufer rfome behcets sindirom since i was 8 and my advice to you is if you be nervous and figithen and strat filing sorry for your self and ask way me kind of questionte you will not help your self and you may make wors for yor self since you have been dignosisis you know your enemey is waiting for your weeknes be strong and try to deal white efeck of behcets i know is is then to do but thet is the way i have dealt whiti since 8 to now i am 40 now sorry ingilis is may 3 langueg sorry for speling mistake kinde regards ol my prey and whis are whit you be strong sister ps if you wanto talk more abut i cane give my contack info bye

[frank1958]

hi my name is frank i was diagnosed with neruo behceths in 1990. the hardest thing for me at that time was not knowing anyone else with behcets. it is so rare people dont understand your illness. behcets is a multi organ illness it can affect any part of the body. My main advice for you would be to keep busy and your mind active try not to let depression set in as i have been tru all the why me stuff and became alcholic which i have overcome i at the age of 53 am in college studing computors and have a vegtable plot to keep me busy and my mind active. when i got behcets i had to give up work as a H.G.V. driver and was only 32 married wth 3 small children. i am still attending hospital and am waiting to see an eye dr and uroligist. i try not to let behcets take over my life i now have 5 grandkids and they keep my spirit up there are some chat rooms for behcets but be warned behceths affects people in many ways some worse than others and that does not mean you will be the same at least your on medication for it now and like me can lead a fairly normal lffe join one of the societys there is one in the uk behcetssyndromesociety.org i think it called google it. I know how frightened you are feeling as i have been there i have behcets 22yrs and its only in the last few years i have come to terms with it, if you can try and find someone with behcets to talk to they are the only ones who will know what you are going tru you, hope this is of some help to you. my email address is [e-mail] if you want to make contact

[Cornish]

First of all, congratulations for getting your diagnosis, and well done for contacting the Behcet's Society.

I am a Behcet's patient too. It took me about 7yrs to get my diagnosis and like you I was scared and frightened about the future. I have had Behcet 's for around 25/30yrs now & have seen so many doctors I've lost count! However, you have come to one of the best health sites ever. The society can give you lots of support and help. Why not give the Helpline a call? It is run by volunteers who either have Behcet's or have a partner/wife/husband with the illness. It helps to talk to someone who knows exactly how you are feeling.

From what you have said you seem to be getting some good help now and you may have to see a few more doctors related to different ways the Behcet's may affect you but try not to worry too much. Behcet's can affect different parts of the body as it causes inflammation in the blood vessels. If you contact the helpline they can arrange for you to have an information pack sent to you.

Helpline No. 0845 1037329.

Hope this helps

[ChurchPath]

Hi, I was first diagnosed with Bechet's aged 20. I've been hospitalised twice with it when it was very bad but apart from that I've been very fortunate and only had three other outbreaks for which I've taken Prednisolone and it seems to have stopped it getting as bad as it used to do. I've just celebrated my 50th birthday so shows you I've been fortunate.

Recently I've had a runny cold for approx. seven weeks, very annoying and I've only just realised it must be to do with Bechet's as I've woke up this morning and my eyes are puffy and gummy, my mouth is full of ulcers and my joints ache, all to do with the immune system as with the long-running cold.

I'm going to get a repeat prescription of Prednisolone and pray that it stops it before it gets worse.

I've been very fortunate and had a happy life, especially the last six years so be positive and the trick is to act quickly when you feel it coming on.

Hope that helps?

Terry.

[Denise--]

Hi, I'm 23 and got diagnoised recently (in April 2012). when I was diagnosed I was delighted-finally I've found out I'm not a hypochondriac!

I had a pretty awful time in hospital too but now atleast they know what it is and they know how to treat it...Yipee!

It's not good being diagnosed with a syndrome but atleast I know what to do when I have flare ups, worrying and stressing out about it will only trigger flare ups. I find that stress is a trigger for me.

[DesperateDan]

Hi

Like a lot of the replies, you are not alone. At least now you can get some help and that is a positive thing. Try not to worry or to upset yourself, as Denise says, stress won't help. I used to get really stressed and irritable and it did me no good whatsoever. I now let it all wash over me and don't stress about anything anymore. It will happen if you get stressed and it will happen if you don't get stressed so I always choose the latter and I suggest you do as well.

Uveitis is an inflammation of the eye and can be a symptom of Behcet's. They think I have this condition but thankfully my flare ups are mild so I am checked annually to ensure nothing is getting worse over time.

As Admin suggests, read the website and relax. Ask questions on here as one of us is likely to have already experienced an issue you need answers to.

DD