New to Behcet's


My doctor and specialists have just worked out that i have Behcet's in the last week. So I don't know much about it, is it normal for during a flare to feel lethargic, have fevers and not have any energy?

Also, I am scheduled to have a flu shot tomorrow, is it going to affect me badly, seeing as my immune is going to be down at the moment seeing as I have just started my remission phase?

Thank you! Any advice will be greatly appreciated!!

14 Replies

  • Hi Mel

    I can't write much at the moment - have an appointment. I was told I was safe to have the flu shot and I have been on very 'aggressive' immunosuppressants for the past two years. Had the shot a week ago and didn't have any side effects.

    Glad you have a diagnosis and can work forward. Also, severe exhaustion is a symptom of Behcets.

    Cheers Lesley

  • Thanks Lesley,

    Took your advice and got it! One less sickness i have to worry about this year hopefully! :)


  • Hi Mel Hun,

    Welcome to the forum hun and a big 'Hello' from your new bunch of friends on here !

    Well you have come to the right place to get some ideas of how it all seems to work by reading and writing on here and sharing your experiences. Can I suggest that you use key words to start off looking at things that are of interest to you by typing them into the search box at the top right of the screen. You will then get anything that contains this subject that has been discussed before on here and will provide you with all sorts of points you may find useful.

    Now then, total fatigue, shivers, sweats and fevers all go along with the BD thing I'm afraid. You will probably feel lethargic and have no energy at various times and you may well be able to link it to when you feel a flare coming on as you get more used to the symptoms as they come up.

    Most of us find that we learn how our own bodies start to react from time to time and we watch for these clues to help us manage our health programs effectively. It is always one huge learning curve and of course, no two people are ever the same so please use the information you read on here as a good indicator of what can happen but not anything set in steel if you understand what I mean. Not everything happens to everyone and you should not be frightened of some of the nastier things we discuss here between members who are very used to dealing with the disease over many years. It really doesn't mean it is all going to happen to you ! We just find it so very useful to talk about it between ourselves and you will soon find this site is very educational about all the variations of symptoms that can be found within BD and all the associated subsequent conditions that many of us have developed.

    We are all mostly a jolly lot of souls and have a bit of a laugh on here too so please join in !

    Thanks for coming forward and introducing yourself hun, it is always good to talk to a new member of our group and know you are now always within close reach of other members of the BD gang should you need support or a little bit of TLC at any time. Okay ? Mwah !

    tootles xx :)

  • Thanks for your welcome, i didn't notice that search button until you said about it and it has been great!!

    I'm sure i will get to know how my body works, i'm taking one day at a time and learning about new things each day! I have had flares before (I just didn't know what they were until last week) But this last one i've had was definitely the worse which made me want to find out what was wrong with me! And it is kind of a relief to find out even though it's quite scary at the same time! Because it brings to light a lot of other strange things happen to me over the last few years that didn't make sense!

    Thanks again!

  • Welcome Mel,

    Just to say "Hello" and that getting the shot is a good idea if you can. I wish I had started the annual jab when I was first diagnosed...

    Low energy and fever? Yes, unfortunately. You'll find lots of suggestions for management & support on here. You'll also work out what your energy sinks are and find ways to guard what energy you have.

    If you're near London, the centre of excellence at the Royal London Hospital is in the process of setting up a support group; their coordinator is a member here and I'm sure details will be posted in due course.


  • Thank you for your suggestion!

    I live in Australia so i am yet to find out if there is anything that concentrate's on BD. I will have to ask around!

  • Hi Mel,

    Another welcome to the group!

    Just as the others have said many of us do suffer from fevers and tiredness.

    I saw a rheumatology Occupational Therapist when I was about two years into the disease and she gave me information about reserving my energy and using it wisely. I was pretty bad at this. I would rush through getting the ironing done and then being left in a big hole for the next few days. I am not sure if this is offered in the UK ( I am from Australia) but ask some questions and take up all that is offered.

    Keep in touch,


  • Hello!!

    I am so glad you said you were from Australia!!

    I am too!! Hopefully you can tell me if there is anyone i can see that knows about BD??

    I'll be greatful for any suggestions!

    Thanks!! Mel

  • Hello Mel,

    Welcome to the group. We are all in the same boat, and support each other through humour and good sense.

    It is perfectly normal to feel tired, and lacking energy with this disease. Sometimes you will be quite ok, but I am afraid there is no knowing when this feeling of overwhelming tiredness can hit you, so it is a good idea to rest when ever you can.

    As for the flu jab, please have it. It is a dead vaccine, which means it should not affect your immune system in a bad way. This does not, however mean you may not feel too well after it. I find it affects me differently every year, and a few days of mild symptoms are a small price to pay to stop pneumonia or any other serious lung infections that you will be open to if you do not have it.

    Good luck with your treatment. I hope it works quickly for you.

    Very best wishes. xx

  • Thank you for your reply, I have had the shot so hopefully all will be fine!

    thanks for your welcome!! :)

  • They've said it all, Mel, so I shall just say, welcome to the group. You've found a powerful source of support!


  • Yes that have all been wonderful!

    Thank you, also I read somewhere that you were a midwife so sometime in the future i would like to ask you some questions if possible. We would like to have children and i'm guessing you would know if there are any complications for someone with BD, (knowing of course that everyone is different).

    thanks :)

  • Welcome Mel,

    This is the place for you to get all the support & at times, difficult questions answered.

    I've learnt so many new tricks to help manage my 10 year old's BD. We are near Melbourne but go to RCH for help, sorry I'm not the one to help you with a specialists name.

    Good luck.

  • Hi Mel

    Somethings wrong with the messages and I can't access your response re which part of Australia you are from. Will wait and see if I can get the message in the next couple of days - I've emailed support but I think it is a bank holiday in England.

    Cheers Lesley

You may also like...