Just had my first steroid injection following a flare, feeling great but worried what will happen when it wears off?

Had a flare of ulcers, joint pain, fatigue and eye problems went to centre of excellence and had my first steroid injection 2 days ago, have been on cholchicine since feb 12 when I recived my diagnosis. I am 18 years old and worried about the future.

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  • Excellent news to hear that you are feeling so great. An early diagnosis is a good thing regarding treatment, management and care. Very many BD sufferers go undiagnosed and untreated or incorrectly treated for years and years. The fact that you are going to a Centre of Excellence is also very good news. It's the best place to go.

    You could contact the Centre to discuss what will happen when the injection wears off. Neither they nor any of us will be able to tell you specifically, but the person who made the decision for you to have the injection knows your situation so perhaps finding out more about why the decision was made and what the intention/expectation was will help. I am making assumptions now so ignore if you have or are already doing this, but I would suggest always taking someone into the appointment with you if you can. Making a brief note of any points or questions you have and taking time to discuss anything that is suggested or offered by a specialist so you are clear about what is going on.

    I hope the effect of the injection will be that you continue to feel great for a long time. That can and does happen.

  • I hadmy first one bout 3 days b4 Xmas it lasted 6 dsys in total n I was still hvn sum pain but it was v moderate n v manageable. The joint paib just gradually increased after dsy six and so did my bone pain. Hvn a flare yhis wk too nice grop of genital ulcers below and all in my throat. So im feeling crappy. I asked how often they can give them. Apt just 3-4 a yr. So im going to save it for b4 holidays etc.

    Hope ur ok. Mk the most of it. But dnt do wat I did n think u cn go hell for leather n do everuthn u used to do as it does wear off n u do feel the consequences

    Xx

  • Well I did lol I cn only speak frm my own experience urs may b diff x

  • Lisa, I have a daughter your age so my heart is with you.

    On another post today, someone mentions that they have benefitted from counselling from the Behcet's centre of excellence team.

    I'm waiting for a referral to the centre myself and I'm not embarrassed to say that I will be accessing some counselling for the first time in my life. I've been through many challenging stages but never endured pain like this, it's very difficult to bear.

    I am sort of gettting the hang of not going hell for leather like I could before all this, when I have a day when I feel good....but I'm not 18 so it must be increibly more frustrating for you.

    I am really glad to hear that you are enjoying such a good result with the steroid injection, I am taking colchicine and sometimes during a flare its just not enough....so I am really pleased to hear that they gave you the good stuff.

    Keep chatting I'm sure it's good for us to be amongst others who truly undeerstand.

    Lots of love Jill xx

  • Hi, I can only day what has happed to myself. Which i'm sorry to say has been very bad up to now. But you are a lot younger than was when diagnosed also on your side is knowledge it is a very powerful tool. Research your medications. Remember that are always side effects to all mess and to try to look at the pros and cons. Ultimately it is your body so your decision so go in with your eyes and mind wide open. Here's wishing you the best of luck and health. Paula x

  • Sorry spelling up the wall again.

  • Thank you Tigerfeet for the advice and reassurance, luckily i have alot of support from my mum and she always comes to my applointments with me, but i do feel like i need to ask more questions while im still in the appointment as usually all the questions start on the way home in the car.

    Lizzy, after today i have learnt my lesson about over doing it, i decided to go shopping with my mum and nephew and after the short walk to town and back i had to spend the rest of the day in bed. i hope your ulcers get better, i find them very hard to deal with, i cope better with the joint and muscle pain as resting gives me some relief but when i have a bout of ulcers theres nothing i can do but wait until they go. Hope your feeling better soon!

    Jill, i didnt know that the centre's had counselling! The one i go to has only recently opened, i have previously had counselling at my local hospital but the person i saw had no idea what behcet's was so was quite hard for them to understand my situation. I was the same with colchicine, it was just not enough for this flare and the injection has given me that little extra boost i needed. Hope your referral comes quick as i felt great releaf after my first appointment at the centre, finally felt i was in safe hands after all the tests and referrals someone was at last dealing with my symptoms and not just trying to guess whats wrong with me. I hope you feel this way too when you go there.

    Paula, sad to hear you've had a bad time, thank you for the advice its really helping me cope knowing i can now speak to people who have got BD aswell.

    xx

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