How often can flare ups occur?

Hi Everyone,

I know this is a very vague question as it can be different for everyone, but seeing as i'm knew to this whole thing I kind of want to know when to expect my next flare up!

My first flare up (not that I knew it at the time) was a bit over two years ago, and my second was 6 months ago, and now i am just getting over my latest one, so they are starting to come a lot closer together. So I was just wondering what the average time is for people!!

thank you

Mel :)

12 Replies

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  • Hi Mel

    With me pre-diagnosis I was getting them roughly every 3 months (say over 10 years).

    When I was diagnosed I had nine months treatment with Infliximab - the doctor and I both agreed that the flares had lessoned in intensity but sped up to about one a month. (He asked me what I thought and then showed me his notes.)

    For the past two years I think I went into a permanent flare which I haven't really come out of despite treatment.

    Lesley

  • It's probably different for different people. When I first noticed my flares they came at least 2 or 3 times a month (mouth and vaginal ulcers), for 3 years. It was a nightmare. I lost all my teeth due to the mouth ulcers. Then they abated some and come about every 3 months for another year. After that I had the mouth ulcers about once or twice a year for a couple of years. Then I went into sort of a remission for about 5 years.

    Then they came back with a vengeance, this time with never ending severe skin break outs, joint pains, mouth ulcers, double vision, and several other symptoms. This has been going on for the last 5 years. The symptoms seem to be easing off at the moment, due to finally being diagnosed with Behcet's last year, and some good doctors and meds.

    I never knew when I would have a flare. There was nothing I could pinpoint that would have been a warning. Just seemed to have a life of its own. But my doctors are finding meds that are supposed to prevent them from flaring up so often.

    I don't personally know anyone with Behcet's so I can't compare my experience with anyone else's. I hope your flares are few and far between!

  • Hi I have found witb this disease no year is the same. I have had behcets for 30 years. It started at 9 but got worse at 12 at that time i was undiagnosed but spent most my teens in hospital until i reached 16. I was then treat with steroids and was managed and had a good 3 years with less symptoms and managed to get a job. I married at 19 had a baby at 21 then i have had flares really bad until i was put on infliximab in 2004 i had no flares for a few years this worked for me really well. That stopped working and began humira which worked to an extent for a few years. I am now awaiting new treatment and been in constant flare for a year. I dont think anyone can say how many flares you will have and when as everyone seems to be different. I hope you dont get too bothered by it too often. Keep strong x

  • Hi, with my daughter she is in a constant flare it very rarely eases for her, the COE is doing all it can to help but at the moment there onto a losing battle

  • Hi, my daughter also seems to be in a constant flare. We are in hospital at the moment as her body over the last 3 weeks has been shocking. The doctors don't know what meds are working and what aren't. The gasto team had a think about looking at the bowel. I was not comfortable with a procedure due to the fact that it will not change medication or dose. Neuro dropping in to see if Gabepantin needs increasing. Who knows what the answer is. Sleep & a hope the 4th dose of Infliximab will help.

  • Hi as all above I too was constantly FLAREDUP at the onset. This was 27 years ago and very little was known about BD and its management, I think it it is fr better controlled nowadays. All I can tell you is I suffered for about 14 years almost nonstop but once I got the diagnosis and the right meds for me( we all react differently) I had almost full remission for 6 years, followed by reasonable healthy for another 3 years. Unfortunately am in a ver bad way just now, probably because I am getting older ( less resistance to illness of any kind) also I haven' t by choice,taken any meds for 3 years as I have other problems which mean high doses of other meds. Having said this in the last few weeks I have seen my Prof, had 2 scansandhave my 3 rd in 10 days time the we will talk about where to go from here.

    We are all unique to illness, meds and how we choose to deal with our problems, but there is some light t the end of the tunnel we just have too find it in our own way.

    Good luck with your BD journey, be strong, speak up for yourself and follow your instincts and you WILL cope.

    Take care

    Hugs bad Smiles

    Billi xx

  • Hi Billi;

    Behcet's disease patients need to keep morale high friends. We see very pessimistic. I want to say it looks light end of the tunnel for all patients. Waiting for the formation of the media. Living in Behçet's disease through the press as one of the friends will hear this year for sure.

  • hello bill

    sorry but i am all so new to this i was told 7 years ago i had BD so i don't understand some of the things you say . what do you mean by FLARUP . when i look back over my life i this i have had this from when i was born and all ways got put down to age and growing being a teen you just had a baby .

    all i know is i have been in pain head to toe for the past 7 years ( out of 10 ...i would say my pain would be about close to 100 ) and i have lots of the other things to but i just suck it up and get on with life best i can .

    thank you sue

  • SOOOOOOO sorry it was meant to read AND smiles. My typing is atrocious.

  • Hi,

    Being told you have Behçet's is really daunting. I was diagnosed last year so know all too well the kind of worries you are experiencing. There are loads of people on here in a similar situation. I have found that finding this site has really helped me understand more about BD.

    As for when you will get another flare, it is hard to say as BD can just flare at anytime. I had a few little flares at the end of last year and then had quite a long period of being free of symptoms. Back in March I was admitted into hospital with a major flare and am still struggling now over a month later.

    The hope is that once you are on the right treatment you should be able to be symptom free for a good spell. Fingers crossed that is!!

    I have learnt to enjoy periods when I am well and not think about when my next flare will be, until it happens.

    Hope this helps.

    C x x

  • My daughter has been in a constant flare since Christmas, previous to this she would have about 8 per year lasting 1-2 weeks

    Clara x

  • Hi,

    Like a few others, I too am pretty much in a constant flare despite trying many different potent meds. I have been suffering for the last four years in constant daily pain and battling many other debilitating symptoms from arthritis, skin rashes, chronic nausea and other GI symptoms, to severe ulcer outbreaks. Some symptoms may ease off a tad for a week or so, but then return again so quickly and sometimes even worse-- but for the most part I always feel unwell, fatigued, and in severe pain. I have very few days where I feel tolerably-well, so I try to really enjoy them and not take them for granted. I do often feel like I will never get better, so it can tough to think about the future or even the next day. My rheumatologist has labelled me as having "refractory Behcet's, meaning that it doesn't respond to typical treatments-- so that doesn't help to offer me much hope either.

    -Jenna

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