Diagnosed now with Severe/Brittle Asthma

I was first diagnosed a year ago with late onset asthma as a result of a chest infection. Up until August this year I never really had any problems other than occasional tightness etc. However, in the last 5 weeks, I have been in hospital twice - 10 days the first time with a peak flow of 95 and 11 days the second - only discharged two days ago. During the second stay, I ended up in ITU having had to be intubated and on a ventilator for 24 hours. I am on prednisolone which I am having to try wean off gradually over 4 weeks. I also am on Serovent and Quvar inhalors and of course the blue inhaler.

My best Peak Flow is 480 but that was a long time before this episode. This morning I managed 170 and this evening only 150 - I am at the point of despair. I left hospital with no wheeze/cough and within 48 hours of leaving, I am wheezing, breathless and having to do my blue inhaler very frequently. My registrar has diagnosed Brittle Asthma (that is what is on my sick note).

I just do not know what to do. My life seems to be ruled now by asthma. I lost one job last year through it and am on my way to losing the second or at the very least, ending up on incapacity benefit. Can anyone please try to give me some positive comments to all this - I am just so depressed about all of this.

Thanks - in anticipation


3 Replies

  • Hi Wlpt,

    I'm so sorry that you've been having such a rough time recently, and that you've had to be admitted and been to ICU. A lot of us here can relate and know what a stressful experience that can be.

    It must be a shock for you to have been diagnosed with brittle asthma - especially if you have read of the experiences of some of the people on here with brittle asthma. I am slightly concerned about that diagnosis, though - you seem to have a very short history of having had any real problems, although things have obviously been bad over the last five weeks. Also, if you are only on pred, Serevent, Qvar and a reliever inhaler, you are not really on anything like maximum medication, so it would be unusual to make a diagnosis of brittle asthma without being on maximum medication. What investigations did they do before coming to the conclusion that you have brittle asthma? With such a short history, it may simply be that there has been some event or environmental trigger that has temporarily destablised you, rather than true brittle asthma.

    Is the team that looks after you a general adult respiratory team, or do you see a consultant with a specialist interest in difficult asthma? If not, it is worth asking for a referral to a tertiary referral centre, a specialist centre for difficult asthma - examples would be Heartlands in Birmingham, or the Royal Brompton in London. They will usually do a full work-up of tests designed both to determine the severity of your asthma and to exclude other conditions that could be mimicking or contributing to your asthma. They will then make treatment suggestions - in your case, there are several things you could possibly try, if you are just on the drugs you have indicated.

    I know things must seem very difficult and bleak at the moment, and you probably feel like your life has been irrevokably altered. Don't give up hope yet, though. You are very early in your 'asthma journey' and there are many possible avenues of exploration. Even if a specialist unit does confirm that you have brittle asthma, this is not necessarily as life-shattering as it might seem - with the right combination of medication, it is often possible to have a good quality of life with brittle asthma. I have had a diagnosis of brittle asthma for perhaps 10 or 12 years, and have managed to get a medical degree and work for several years as a doctor in that time - it hasn't always been easy, but with the right meds and a supportive medical team, I have achieved plenty of things despite brittle asthma.

    In terms of your current situation - peak flow of 150, frequent use of your reliever inhaler - you do not sound well at all right now. Please SEEK MEDICAL ATTENTION urgently - via the out of hours team or by dialling 999. I know that having been discharged so recently, you must feel very reluctant to go back to hospital so soon. You have seen, though, how bad asthma can get at times. It is not worth the risk of staying at home with uncontrolled asthma - you need to get sorted. A short term admission now, and perhaps the opportunity to discuss with your team some of the things that I have mentioned, could save you a lot of pain later.

    I know that in the short term, at least, that probably is not what you want to hear - but in the long term, I do think there is considerable cause to have some optimism.

    Hope this helps

    Em H

  • Helloo & welcome to the Asthma UK boards!

    sorry to hear that you have been unwell - Em has given you some very good advice. I hope you are feeling a bit better today or have got some help.

    I am Brittle asthmatic and although it took a long time to sort out I am able to live and work part time too. I have learnt to live with my asthma - I rule it and not the other way round. I describe it as a steady state of instability!

    Anyway, Take care




  • Hi Wlpt.

    Welcome to the boards. This is the place to be if you need a shoulder to cry on or some good old-fashioned advice.

    As a long time Brittle Asthma patient I'd have to say that with the PF readings and symptoms you're reporting you'd do well to see your GP or asthma nurse asap. I'm not a doctor or health care pro but based on my own experiences (480 is also my best PF reading) 170 is way too low and you should get someone to have a look at you - especially if your PF rate is accompanied by severe symptoms.

    I lost my job in January 2006 through redundancy and have found it almost impossible to work ever since. My last employer had been pretty good regarding my asthma but finding a new job with such understanding has been impossible. Since losing my job almost 2 years ago I have lost 2 jobs due to problems with my asthma sand lengthy stays in hospital. I could go onto Incapacity Benefit but whilst I have one tiny breath to work I will try - as I'm sure will most people.

    Right now I haven't worked for nearly 4 months as my chest is so temperamental and it frequently causes me to suffer bouts of depression. It is certainly an ongoing battle. Sometimes I also feel my Asthma rules my life and feel angry, exhausted and frustrated.

    That said, whilst diagnosis of Brittle Asthma is not something anyone wants to hear, you do adapt to it and manage it as best you can. The key is not to struggle on by yourself but to seek medical attention any time you need it and talk to people like those here on these boards who are all nothing but good and kind people who will not want you to sit afraid and silent. Talk to us and we will do our best to help.

    A problem shared truly is a problem halved - believe me.

    No one can take away your asthma - yet (we live in hope!) but it can be managed and talking with others who understand really will help. There are some top tips about to help you understand your condition and make you feel a little brighter.

    You really aren't alone I promise you and if we can help then we will. Send me a PM if you want a real chat and maybe I can help cheer you up. I'm up to my eyes in pred and stuff but not feeling too down so who knows?)

    The offer is there if you need it and I suspect it won't be the only offer you get.

    You know where I am.

    Take care, Ruth. xxx

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