BD Progression

I was reading the American lady's site behcetsdisease.com/about.html where they seem to make a big deal about BD having a shelf-life and sort of switching itself off at some point. This has confused me because it's not what I've been told. It is certainly not what I'm experiencing.

In fact, my disease is getting progressively worse - new symptoms, new areas of pain (the latest is my elbow and my bones as well as my joints), and little space in between flares. In fact, I told my consultant that my diagnosis must be wrong because I am now constantly poorly - sometimes I'm less poorly than others but I'm never 'well' as I used to experience it.

He insisted the diagnosis was correct and, of course, I know very well that it is. Mostly I'm upbeat but sometimes - and especially just lately - it just all gets on top of me and I kick against it all. This probably just makes it worse!

Anyway, there is a question here, honest, and it is this:

How has your disease progressed and what is your understanding of BD progression. I realise, of course, that nobody really knows but it would be interesting to find out your understanding and experiences.

Di

11 Replies

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  • My BD is progressing.My symptoms started ten years ago,first it was mouth and then gential ulcers, eyes, bowels and muscle ache have followed.I have read that it can 'burn out' although how long this takes seems to be mystery(I believe the burn out theory is contested)

    I don't know if it's important that burn out happens or not because you are still left with the damage,my eyes in particular will not recover.I also think the drugs used for treatment can cause side-effects.Prompt treatment is needed before damage or is progression inevitable ?

  • That's what I'd like to know, Dundee.

    In my current bleugh mood the thought of this progressing further and further is quite disturbing. I was diagnosed around 6 years ago now, although I believe I've had it much longer than that.

    I'm with you on the side effects of drugs too - the major cause of my unhappiness at the moment (it's not depression, I know all about the black dog and he's not nipping at my heels quite yet) is the Cushings Syndrome that has been caused by the steroids (and officially diagnosed, not just me saying it).

    I got the prednisilone dosage right down to 2mg a day from 20mg at it's height and my eyes and cheek bones were beginning to reappear - then I was advised to go back up to 10mg for 3 months to try to get some sort of control over my symptoms :-( I realise that this is likely to happen over and over again - hmmph! At the same time I'm increasing my methotrexate from 15mg up to I know not where - I'm hoping that if the relief given by the mxt improves then I may be able to reduce and possibly discontinue the steroids.

    I was one of those who thought my disease was mild - then just recently I noted all my 'issues.' They are many:

    * A perforated septum in my nose due to ulceration. This crusts and bleeds regularly

    * Self catheterisation on a daily basis due to the damage caused by urethral ulcers

    * Face and body lesions (currently severe and not responding to treatment)

    * Severe joint pain - ankles, knees, pelvis, shoulders, thumbs and now elbows

    * Muscle pain - this is fairly new

    * Frequent severe headaches

    * Oral ulcers - these are well controlled with colchicine though

    * Shortness of breath - not all the time but debilitating when it happens. Usually lasts around a month. I've been tested and its not due to any drug reaction

    * Damage to the heart muscle - the cardiac consultant thought I'd had a heart attack because that's what the damage looks like. If I have had an 'event' I didn't feel it (not unheard of apparently!)

    * Extreme fatigue

    The elbow pains and muscle pains are new and the lesions have worsened dramatically.

    I've suffered from headaches and oral ulcers my entire life and pains in my knee joints from early teenage years. When diagnosed I had these plus urethral ulcers and acne like lesions on my face. Everything else has progressed from there. So how far can it progress?

    I think perhaps I should stop thinking!

  • Progression is not inevitable and nor is permanent damage.

    I would never belittle anyone's symptoms but you don't often find positive posts on a forum like this - I wouldn't expect to - people who are ok don't tend to spend time telling others about it. It would be nice if they did! Therefore we tend to read about the worst cases but I think those with the severest symptoms are in the minority.

    For some people BD is a series of remissions and flare-ups, a flare up being anything from an outbreak of ulcers to hospitalisation, for some it seems relentless but eventually the right treatment and management is found to keep it under control. For others it is mild, or becomes mild or symptom free for very long periods of time. Of course that is not the case for everyone and there are those whose condition is very hard to control, who have permanent damage and who suffer greatly because of it. Even then it doesn't necessarily mean that they will continue down that path.

    Research is going on all the time and hopefully with new and different things to try there will be more remissions and one day a cure.

    Personally, I know people in all of the above categories.

  • Hello Di,

    I am so sorry to hear about your problems, and hope that today, when the sun is shining and the birds are singing you are feeling a bit better. It is so easy to get 'down' with BD. Try and have little goals in the not too distant future which are in your capability to achieve. Probably you think that things can never get better. Well, sometimes you may surprise yourself. It often just takes a kind word form an unexpected source, or something similar.

    Cheer up, my dear. We do unfortunately have to face up to the fact that this blooming disease is at present, incurable, but life must go on with us overcoming the symptoms which make you want to cry.

    I wish I was there to give you a comforting hug.

    Suzanne

  • Thank you Suzanne - your reply made me feel all warm and cosy!

  • Thanks Tiger - I was just having a moment, that's all. x

  • Just one? I think we should give out medals for that. BDlympics medals perhaps?

    I think I've had 5 'moments' today already LOL.

  • Hi Di

    Wish I could give you a hug as well. Mind you when I'm down I don't want anyone around me!

    I have 'progessed in severity' since diagnosis and with all the treatment thrown in!

    There must be all sorts of degrees of BD. One person (not from this group) told me he had been diagnosed with Neuro BD and dancing at nightclubs released endophins and made him feel better - I'm having trouble walking around my flat! (Still makes me cranky when I think about it).

    On that note I'm off to bed - drugs are kicking in.

    Lesley

  • Thanks Les xxx Sleep well m'dear

  • Hello, Di.

    I'm 58 years old. I was diagnosed with BD at age 27. After years of suffering with various symptoms of the disease, I entered a remission period - almost - total over the last 25 years, albeit with some relapses by half, sometimes violent but quick.

    A year ago I was struck by new symptoms: double vision, cerebral vascular problems until a pulmonary embolism last May. I'm in recovery and I'm doing well, slowly, after being treated with prednisolone and cyclosporine, in very high doses.

    I discovered long ago a very important thing in DB: we should only have a life of wellness, avoid pressure, any kind, and we should never pressured to do ANYTHING. The balance and relief of all symptoms will be well underway.

    I was stubborn, often, and only now realized the body's signals.

    A Happy New Year to you and all who suffer from this disease, which makes us learn every day.

    Ponjo

  • While I'm newly diagnosed with BD, I know someone who had a hard time with BD for a number of years and who has been in remission for about 8-10 years now. There is hope.

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