Who has a diagnosis of Severe/difficult/brittle Asthma?

I am just curious which people on asthma uk forum have been diagnosed by a consultant from a hospital that the have severe/difficult/brittle asthma?

How many was this at a local hospital? Specialist hospital? Specialist Centre?

who has an asthma plan or protcol?

Who has an emergency treatment document?

Who has a specialist nurse?

Reason i say only a diagnosis from a consultant is because according to the british guidelines only them can say it with authority so to speak. This is something i have read. So am curious to know.

i am well aware other medical people say the diagnosis but they have not actually sent patient for tests to confirm it or to ensure patient have correct treatment for there quick spure of moment diagnosis. (ambulance staff, first aider, a and e etc)

Thank you for people who are willing to reply.

Plumie

32 Replies

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  • I was diagnosed as brittle asthmatic back in 1994 by my local consultant who does seek advice and also refers to the RBH. Initially it was type one but over the last 7-8 years it is both types, one and two just to be awkward! I just use the term brittle asthma now. Also difficult and severe, depending on who I am speaking to. I prefer the term chaotic!

    I have been offered referal to RBH and I will take it if my asthma really gets unmanageable again.

    It is currently in a steady state of instability...... brittle.

    I know that the term 'brittle asthma' is often banded around by GPs etc for people with uncontrolled asthma which at the time can be quite scarey and worrying for the patient but true brittle asthma is rare and a whole entity in itself.

    My asthma is chronic all the time despite hefty whacks of meds, I also have the occasional good few days, but then it catches up with me. I am also prone to sudden severe attacks needing adrenaline.

    So Chaotic!

    Kate

  • I was diagnosed as brittle asthmatic by my first specialist consultant. My current consultant supports this (he is heavily involved in Xolair trials and difficult/brittle asthma at Guy's Hospital, London) with ""difficult"" chucked in for good measure!

    I have a specialist nurse too, as well as a practice nurse who looks after me and an excellent GP. Although GP's thought I was brittle previous to my official diagnosis, it was a consultant that did the diagnosis in the end. I am primarily type 2, although I have started to have more and more type 1-like symptoms.

  • Hi Plumie,

    I was diagnosed by our local hospital consultant as difficult, moderate to severe brittle type 2. I have an asthma plan and a specialist nurse. I would like to be referred to a specialist centre if it gets any worse but mine is manageable most of the time with roughly 4 - 5 emergency admissions a year (depending on the year) and been ventilated a couple of times - not an experience I wish to repeat with so far, two respiratory arrests.

    Feejay

  • My son who is 14 has a number of different names for his asthma depending on which doc sees him! Our GP just says asthma, our local calls anything that doesn't respond to 'normal' therapy brittle asthma and the brompton have called it severe asthma, severe therapy resistant asthma, difficult asthma, very severe asthma and steroid unresponsive asthma!

    We are fortunate enough to fantastic resp nurses both in the community and at the Brompton. Couldn't be without them, they are truly life savers.

    We also have a protocol for when to seek medical help and also a letter written up between local and specialist hospital for all docs at local to read regarding treatment and when to admit. Unless Jay needs immediate treatment we can bypass A&E with an emergency card to the ward so Jay is seen by a paeds doctor straight away.

    Also despite having tried almost every med available for asthma treatment (so far) Jay doesn't have a neb for home use. His protocol is ""If he needs nebs, he needs to be seen"".

    hope this helps x

  • My GP reckons I have moderate asthma yet when I went to A&E one of the doctor's there said I have brittle asthma.

    When I was referred to a respiratory specialist at my local hospital they said I have severe asthma and they wrote that on the report they sent back to my GP.

  • I have. It was a local hospital but think it is also the specialist one too.

    I have an asthma plan but not an emergency protocol (or if I do I don't know about it)

    I also have a specialist nurse who I annoy frequently.

  • I have a diagnosis of severe allergic asthma which is difficult due to having ABPA . I also have been confirmed after having various tests as having occupational asthma and excercise induced asthma. So nothing is straight forward (I really miss things being normal and uncomplicated!).

    I do not have an asthma plan or emergancy treatment document. I don't think I have ever been asked if I wan't one. Normally just go to GP or a and e depending on time of day and severity of attack. I have access to the asthma centre/nurses at my local costa.

  • Hi

    I was diagnosed by Resp Consultant as Severe Persistent Asthma, thats what they tend to put on any forms etc, but many staff often talk about how brittle it is. I would have to go over to mainland (England) to see any other staff/centres so not been to specialist centre, though our resp team has good ties with centres. Also have resp nurse at local hospital who I see. We don't really have practise nurses here yet.

    I have an asthma plan, currently trying to get some sort of protocol / emergency treatment type document set up as often have difficulties when following my plan when I have to do the 'go to a&e/ambulance' when home neb not helped or not lasted long enough / getting worse. As they usually just want to treat with back to back nebs etc and send home as soon as peakflow doesn't drop after hour or hasn't got worse, or I can speak again. Rather than do assessment as to whether I need to be coming in, as are like you have a neb at home, just use it more often if u need to. Whereas its drilled into me by resp nurse/gp/hosp doc that that isn't acceptable and thats when problems happen.

    It's a really good issue to bring up Plumie, as I have met people locally who have been told they are brittle, maybe by a locum GP or a&e staff but aren't on the type of treatment / or help that someone with that type of asthma usually gets. Whereas when all tests and support given, sometimes it turns out inhalers weren't right type, didn't know about own triggers and when to use meds, or technique was pants, and with right help can get back to having control, which is great and can get back to doing everything without lungs misbehaving too much. I hope that makes sense as not sure I phrased it right.

    Auk is great for the education and the forum really helps I feel with some of those things, with sharing tips about how we cope with our triggers, how we deal with for example exercise induced asthma, from a personal experience.

  • Been diagnosed with brittle. Servere. Difficult and a new one neutrophillic asthma. I've been put on a national database for this. These diagnosis been bounded about since as far back as I can remember . I never ever thought it was that bad till other people pointed it out. Now attend difficult asthma clinic. No avtionnplan as in writing but always discuss what to do should a problem occur. Plus can get emergency appointments at the clinic. The respiratory nurses are excellent and can't fault them. . I don't have an a and e plan and after the last two admissions this has concerned me. As it wasnt a good experience.

  • Hi Plumie

    Sorry to see you've had a bad spell recently, hope things pick up for you soon. I have been labelled difficult asthma by my local consultant. I also see the repiratory nurses who are great. I did have tests at the Brompton but prefer to be managed locally. I don't have a written asthma plan but the resp nurse told me to ring 999 if peak flow falls below 180 or if nebbing twice with 5ms ventolin and 250 atrovent doesn't give relief call for help. I wasn't seen by the asthma team at the Brompton but host defence due to repeated infections.

  • I have been diagnosed with Brittle Type 1 with type 2 traits!! By the consultant at Heartlands. But before I had been labelled as Brittle by many people.

    I do have resp nurses but they are in Birmingham and arent much use as I never get ill mon-fri 9-5!

    I dont have a emergency procall!!

  • Action plans!!

    I have a two page detailed protocol with a highlighted box for emergency meds in A&E.

    I have also done a one page Personal asthma action plan, adapted from the AUK one because I couldn't fit mine into it! It is brighlty coloured with green , yellow, amber and red and written in what is Good for me or total rubbish / help!! for me in the red bit.

    This ensures that all but the most cocky know it all doctors etc (Sorry to the majority of med professionals ) follow what works best and quickest for me.

    Kate

  • Matty was diagnosed by a respiratory specialist as being severe and difficult and local hospital as brittle type 2.I was diagnosed by my gp as mild asthmatic until near heart attack because of asthma and then hospital said brittle.I'm classed as brittle by hospital and will find out next week what my consultant thinks!!

  • I have an asthma plan, emergency treatment document and a specialist nurse. I was diagnosed with brittle asthma by a GP and I am still awaiting for an appointment to see a consultant at the hospital

  • Mine has been described as feisty, unstable, chronic, naughty, misbehaving and at times, brittle.

    The generally agreed diagnosis is chronic unstable asthma which is liable to behave in a very unpredictable manner. I also have a treatment protocol I am under my local hospital, my consultant is excellent.

  • Hi plumie,

    I've been diagnosed as severe by my hospital con who's a leading specialist in my local hospital. It's one of the biggest hospitals in the country.

    My asthma nurse practitioner diagnosed me as brittle lately but I'm gonna check that with the con in a few days. The gp's I've seen at my surgery(4 different ones within last few weeks) don't really have a clue about asthma but all said it was severe.

    I haven't got a written asthma plan, I've got one in my head lol.

    I know I should have the asthma emergency card on me but keep forgetting it:-/

    love Lydia x

  • I was diagnosed wit type 2 Brittle at Heartlands but now rarely go there as its managed by my local hosp and have a protacol with them, and GP.

    I also carry an acute attack plan with me which paramedics can follow and then later at a&e which was drawn up at hearlands and then tweeked as the years have gone by.

    Snowy

  • wish i wasnt but yep i have brittle asthma-i knew my asthma was bad but only knew it was classed as brittle after reading it on a form written by my consultant.

    edit- oops yep i have an asthma plan but it keeps changing and will be getting changed today as well

  • Ive been diagnosed with severe brittle asthma.

    my specialist at the childrens hospital (when i was 6 weeks old!!) diagnosed me

    I have a plan and a specialist nurse.

    and i dont have an emergency treatment document that i know of.

  • Interesting topic Plumie.

    I've been told I have 'difficult asthma'. I go to my local hospital (Aberdeen- kind of a specialist hospital) where they have a difficult asthma clinic.

    I haven't actually been to the specific difficult asthma clinic yet, but will hopefully get an action plan etc. sorted then and meet the specialist nurse. I did have an action plan a few years ago but would like a new one.

    Bryony

  • Hi Plumie,

    Good topic. I'm in the States so things are similar and different here. I was lucky in that I got referred right off to a specialist by a university GP. Still go to the same asthma specialist (allergist). Was right off diagnosed with moderate persistent asthma. Last year my GP said he would say it's moderate to severe. It can be quite difficult, but I've never actually been hospitalized. However I put this up to really good and attentive docs. I make several emergency trips a year to see my asthma specialist, and usually end up in the ER at least once a year. I do have an action plan that has been quite useful when I see either my GP or docs who aren't familiar with me. Also I do have several asthma nurses who are fabulous. They really make the whole thing work.

    I have been to a regional center as well, but haven't found them any more helpful than my local people. They used the term refractory asthma, and steroid resistent asthma, as does my local specialist occasionally now.

    Bee

  • I'm not really what you're asking for, but I wanted to share anyway! :-P I was diagnosed with asthma by my GP only a few months ago, based on symptoms, peak flows (including demonstrating reversibility upon salbutamol dose), a personal history of atopy and a family history of asthma and allergies. Last time I saw my GP she said that my asthma seems to be quite brittle at the moment, but I think that she was referring to the fact that I seem really well controlled and then go downhill so suddenly it's almost like flipping a switch. I wouldn't have thought my asthma was severe enough to be actually considered brittle as I've never been in hospital with it, although I did have an attack a couple of weeks ago that I probably should have sought medical attention for, but instead I ended up using shed-loads of ventolin and eventually turned a corner. [I know I should have just bitten the bullet, but I had a really bad experience at A&E before I was diagnosed with asthma, and because of that I worry that I'd be turned away because I don't normally wheeze and my best peak flow is much greater than predicted so a poor peak flow for me would be a good peak flow for many asthmatics.] Anyway returning from my little tangent my GP wants to send me for allergy testing (I'm not so sure of the benefits really, it's not like it's gonna stop me from being allergic and I've been all avoiding the triggers I can anyway) and if montelukast doesn't fix me she's definately gonna refer me, if it does she still might be sending me anyway, ho-hum. I've been on montelukast a week now and things have been looking pretty good, even being around decorating dust at a friend's house and it didn't set off anything too catastrophic and it's early days yet, but because of my pattern of symptoms it's hard to tell really. The only problem I'm having so far is mental dry-mouth, I swear I'm drinking enough to sink a cruise liner and yet my mouth still feels so dry, but I'm on a number of meds that cause dry-mouth (not just for asthma but some other stuff too) so it's only to be expected and it's a small price to pay really.

    Edit to add that GP wants me stable before coming up with a proper action plan. So unless you count going to docs if I need to or got to A&E/call and ambulance if really bad an action plan I don't have one yet.

  • Hi Plumie,

    My asthma was diagnosed as Brittle Type 1 by the first consultant I saw at my local hospital, and subsequently the same diagnosis by every other consultant since. I even managed to demolish one of the hospital's spirometer machines when I had an attack and collapsed during a test. Very embarrassing!

    The latest is, after finding a tumour (luckily benign at the moment) behind my left ear, that my breathing is now so bad, and my asthma so out of control, that I cannot have the general anaesthetic required to have it removed. The reason for the general is that the tumour is sitting on my carotid artery, making a procedure under a local anaesthetic out of the question. Anyway, my consultant (always jolly) pointed out that I shouldn't worry about the tumour as, barring a miracle, my asthma will kill me before I see retirement age, or the tumour causes me any problems. Not a happy outcome, but not a shock as I had already been told that my lungs are deteriorating and I have less than ten years left...

    My asthma specialist (a nurse practitioner who has Type 2 Brittle Asthma herself) has also confirmed my Type 1 status and life expectancy, and my GP (ever helpful) always defers to her with effect to my asthma treatment - so I am very well looked after by a wonderful NHS team whom I see nearly every month.

    My only regret about my asthma continuously worsening is that I can no longer do my volunteer work for Asthma UK.

    Sorry for going on so, but I just wanted anyone who reads this to know that as well as being diagnosed correctly, I haven't been later abandoned (for want of a better word) as some others have.

    John

  • I dont normally jump into these type of posts but can you be careful as to how you word your posts.

    If we are being technical to get a diagnosis of brittle asthma (which everyone seems to want for some reason) you need to go to a tertiary centre and go through the difficult asthma protocol. Only once this has been achieved would you be told you have brittle asthma or not.

    Many consultants at local hospital who do have a specialist interest in asthma may bounce around the term brittle asthma and some nurses do to but they are not in a position to say you have brittle asthma. It is only really hospital such as heartlands,RBH and now Southampton that have this ability to determine brittle asthma.

    Also JohnC can I point out that having brittle asthma does not give you a shorten life expectancy and when you have brittle asthma you cannot say how many more years you are going to live. You may find you asthma stabilises and you find some control however equally you may not. Having brittle asthma does not put a stamp above your head saying that because you have this you are going to die sooner. You may ahve a higher risk of having a life threatening attack but it does not mean you have 5 years to live or whatever you were told.

    This thread I am afraid can be very misleading to some of the more vulnerable users and the more impressionable user.

    Olive

  • I've removed my post that so upset Olive and sent her a message apologising. This is just to point out to anyone who read it that my diagnosed short life expectancy by a qualified NHS consultant was due to the damage to my lungs which caused my asthma, and not to a possible future attack.

    Sorry!

    John

  • Hi Plumie, I think it is a very interesting topic, and am glad to see you have included severe and difficult along with brittle asthma. Reading through the posts it just goes to show how many people have been told they have brittle asthma by someone 'unqualified' to give this diagnosis.

    I agree with Olive, there are only a handful of 'specialist' centres in Britain who are able to truly give a diagnosis of brittle asthma, even then this is only after numerous tests and investigations. My son is under the RBH and went through their difficult asthma protocol. This involved lung function tests pre and post Ventolin, exhaled nictric oxide test, sputum testing, ph study, bronchoscopy with biopsies and a home visit to ensure home environment wasn't making his asthma worse. He was also given a steroid injection and lung function and sputum testing was done again 4 weeks later to see how well he responded to steroids.

    He is still uncontrolled despite being on daily Pred and having tried all conventional treatrments up to step 5, steroid sparing agents, IV immunoglobulin, Xolair and Azithromycin. HOWEVER, he does not have Brittle asthma.

    Below is a post I copied and pasted from a previous thread I responded to. Hope the infomation helps. I just want people to realise that not all severe asthma is classed as brittle, and it isn't treated any less seriously without this label.

    ""Just to reassure you, I honestly believe too many non specialists use the term 'brittle asthma' far too loosly.

    Brittle Asthma is a specific phenotype of asthma with the following definition:

    Since 1977, the term brittle asthma has been used in different ways by different physicians, leading to some confusion over whether such a group is truly separable from other patients at the severe end of the asthma spectrum. In order to try and clarify this area we have suggested a classification of brittle asthma into two types; a feature of both types being a susceptibility to repeated severe attacks resulting in hospital admission.

    Type 1

    Patients who consistently demonstrate wide peak flow variation (greater than 40% diurnal variation for at least 50% of days), despite maximal medical therapy including at least 1500 µg/day of inhaled beclomethasone or equivalent, are classified as having type 1 brittle asthma.

    Type 2

    Patients with type 2 brittle asthma appear to be well controlled between attacks which are often sudden in onset (occurring within minutes) and are associated with loss of or disturbed consciousness on at least one occasion.

    As you can see brittle asthma is just one form of severe asthma. Unfortunately many GP's and even consultants use the term to describe asthma that is not particularly well controlled. It can be normal (albeit frustrating) to go through a period where asthma control is lost especially during heyfever season or after a nasty infection,however with the correct treatment a great majority of people will regain control. This quite often takes time to find the right mix of medication/doses that work for you. There are 5 steps of asthma treatment to work your way through before being classed as 'difficult to control', and only 5% of people with asthma ever get to this stage.

    My son was described as 'brittle' by his local consultant and after 5 years of not being controlled on 'maximum' meds and regular admissions he was referred to a specialist centre. He has had numerous 'labels' for his asthma since being there including, difficult, steroid resistant/dependant/sensitive, severe therapy resistant and just plain old severe! He has tried all conventional meds and a number of specialist treatments, none of which have made much difference, but he has never been labelled Brittle.

    What I am trying to say is don't worry, you are correct in thinking the term was used loosely and as your little man grows hopefully his asthma will improve but if not it is more than likely to be well controlled.

  • hi olive

    I think you have misread the post! Please read it again. It is asking who has a diagnosis from a specialist doctor or centre. So that we can chat to each other and support one another. It was very hard to word so that it reached the correct people. It does have that you can only be diagnosed by a specialist doctor or centre contained in the message. I did not want to offend anyone. And i am sorry if it did. I tried my best

    Plumie

    Edit: hi koolkat

    I included all three because they are similar but not the same! I no longer know what i am! I have lost the plot in all honesty. I just know i am on a lot of medication and not controlled but there is no other treatment at present i can have. (allergies and intolerances) I am now under a specialist in difficult to control asthma and he is starting from the beginning and reassessing me. I can only tell people what i am told by medical people. I am quite willing to be honest and say i do not know what asthma i am anymore? I only know what medication i am on (see profile) I was only looking for support from understanding people. Sorry if this was wrong!

  • Apologies to anyone I've annoyed or offended, I didn't for one minute think I actually have brittle asthma. I was just pointing out that my GP had used the term to describe my poorly controlled asthma. Like I said, I assumed that she meant the pattern mimics brittle type 2 in that I appear well until suddenly I'm not. Sorry if you feel my post takes away from the seriousness of your genuine brittle/severe/difficult diagnosis, that wasn't my intention. I merely wanted to share my experiences. Sorry

  • Hi Plumie,

    Hope you are as well as can be. I am going through the same thing at the moment- especially as my subcut doesn't seem to want to play ball any more :(

    Here's hoping it's just something in the air and soon we will be better :)

    Keep on keeping on!

    Hopefully we know here none of us are judging anyone else and we are all here support whatever their diagnosis

    x

  • hi-just wanted to add a little bit to this post. as i said prev on a reply, i have been diagnosed with brittle asthma after having dodgy asthma for years. i read it on a consultants letter but wasnt told. my asthma is very very very unstable and difficult to get and keep under control. it can change by the hour when the conditions are right(well or wrong conditions if you see what i mean). my meds are constantly changing as i dont respond to monte etc and am often on steroids so getting fatter by the day with a flippin big moon face-nice. i have on a few occassions been very very close to being 'put under' as i wasnt coping and get taken to a+e regularly even though i try to avoid being admitted. anyway what i wanted to add was in reply to the post stating that people seem to 'want' to be classed as brittle...to be honest i couldnt give a monkies what my asthma is called i just wish it was under control so that i could lead a normal life and i would hate to meet anyone who wants to have brittle asthma cos its blummin awful xxx

  • I was diagnosed at the RBH about 12 yrs ago with brittle asthma types 1 and 2 after doing the difficult asthma protcol. Despite being on max meds im not controlled and i have wil also have VERY quick deterioation too.

    My local con was a reg at RBH once upon a time and so manages me but does contact his colleagues at RBH if he feels he needs to.

    I have an emergency protocol i carry with me but as yet dont have 1 for A + E as recently i have stopped responding very well to mag sulph so it is under review.

    I have access to resp nurses at my local but they admit they are a bit out of their depth with me, i also have a community matron who liases between the drs. My GP is good but again normally sends me in if any doubt.

  • I have a diagnosis of severe asthma/difficult to control asthma. There have been several terms mentioned and last time I was in A&E the doctor asked me if I had brittle asthma as he said it was mentioned in my notes. I have also been seeing another consultant at a different hospital- a professor -and so I asked him. His reply was that he didn't like the term brittle asthma, but he thought I would probably fit the profile. He also said that the asthma labels would be changing some time soon.

    I sympathise with Jay39 about the weight gain and moon face. I was really upset the first time I looked in the mirror and saw my face getting puffy - my husband's way of getting me to deal with this was to go around singing ""puff the magic dragon"" - he looked so ridiculous that I had to laugh. I still find it's a bit of a shock sometimes when I look in the mirror, but in the grand scheme of things if the steroids make breathing easier then a fat face is a small price to pay. Still annoying though.

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