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Brittle Asthma

My name is MaryM. I've was dignosed with asthma as a 7 year old child but from the age of 14 the asthma stopped and I hadn't had any attacks for years Then at the age of 40 I was admitted to hospital with suspected heart attack I was finally diagnosed with unstable Angina and a return of asthma. I recently had some more tests done on my heart because of this unexplained shortness of breath. The heart specialist done a bunch of tests and also referred me to the Lung function clinic. I was diagnosed with a heart the is working above 54% but I have been discharged from the cardiology clinic. But I haven't been discharged from the Lung function clinic as I have been diagnosed with Brittle Asthma. Has anyone heard of this form of asthma? and so far we still haven't found the best medicine to help me. The speed and the severity of these attacks are really worrying and frightening I needed help two times between Monday and Friday. I am on steroids again this is the third lot of steroids in the last eight weeks plus two inhalers

I would be most grateful if there is anyone who could shed some light on this for me as you don't get enough time to speak to a doctor and ask the questions that worry's you these days.

Thank you for reading this post.

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Hi there, there are quite a few of us "Brittles" It typically means you have difficult to control asthma. There is a type 1 brittle and type 2 Brittle. I am high functioning brittle. I have very good lung function, but can get super sick, super quick. So I have a fairly complicated protocol to follow. I think everyone's asthma is very different, and different people react differently to the drugs. I would say don't stress too much over the label, just be very good about keeping an asthma and peak flow diary, which may help you get back some control.

Best

R

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Thank you so much for your advice. I will start doing this from first thing on 25/09/17.

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Hi R

I printed off some peak flow charts in the early hours of this morning and I have started recording my peak flow readings. I have also started my asthma diary.

Thank you so much for you advice. I think with more knowledge, advice, answers to my questions and ideas it will help me feel like I am getting back some control of my life and relieve the fear that I am experiencing at present.

Best

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Write the things down you want to discus with your doctor. I have brittle asthma and although I have flare ups things are under control. This site can only offer advice, your doctor/asthma nurse knows you best.

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Thank you so much for your advice. I have started to make some notes to discuss with the Dr on my next hospital visit. I am 68 year old my and I am under tremendous stress. Due to my husband of 46 Years being terminally ill. It's the speed, worry, fear and freaquancy that each attack brings.

I know nothing positive about this particular type of asthma although I have been attending the hospital since March 2017. I was told by the hospital that I had asthma which wasn't being managed or controlled. I didn't know it was brittle asthma until Friday when the locom dr said "typically brittle asthma attack no infection so let's give you some more steroids." But it's very relieving to know it can be controlled. No medic has said anything like that to me as yet. But it's early days.

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This is so like my story. I to grew out out of my childhood asthma then developed severe Brittle asthma in my late 30’s. I have had so many admissions many to critical care. I agree so scary. Now in my 50’s im being investigated for heart problems.

Brittle asthma is more common than you think. Have you looked at asthma uk website or spoken to one of the nurses?

This site is good for support too.

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Wow how similar are our stories. I have thought about going on that website to have a look. But haven't got around to actually doing it. Many thanks.

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The part of this that worries me is " if there is anyone who could shed some light on this for me as you don't get enough time to speak to a doctor and ask the questions that worry's you these days." None of us can replace good medical advice. Is it possible that your doctor will speak with you on the telephone?

I'm sorry you have brittle asthma. I'm new to this site but I've noticed that it's mentioned several times. All the best with it.

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I asked the GP on Friday if he could explain just what this brittle asthma was and how different it was to the asthma that I have suffered from for years. Diagnosed as bronchial asthma. I have never been hospitalised with my asthma thank goodness. He said to go to reception and rebook a 20 minute appointment slot with the receptionist. As I only had a 10 minute appointment right now. There wasn't enough time to go into and explain the detail about my present condition. I followed his advice and the earliest appointment I could book was for Thurs 19th Oct.

Best

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MaryM, I hear you and wish you well. Please rest, take little steps. :0)

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Awww Thank you.

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I have brittle asthma too, and I agree with above, take little steps, it can take a while for them to find the right medicines as everyone is different. But there are lots of things out there and more being found each year. Take care x

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Brittle asthma is a rare, severe form of asthma. Sufferers experience the same symptoms that affect all asthmatics, including wheezing, coughing, and difficulty breathing, but the symptoms are much harsher, tend to come on suddenly and unpredictably, and are often resistant to traditional medications. There are two varieties of brittle asthma, Type 1 and Type 2.

Type 1 brittle asthma is characterized by chronic symptoms that affect sufferers on a daily basis. Patients are typically on high doses of daily medication to control their asthma, as regular doses are ineffective. The ongoing nature of their problem often limits their ability to perform normal day-to-day tasks, making it very difficult and frustrating to cope with. In addition to their chronic condition, they usually suffer from periodic severe attacks that come on with almost no warning. These patients often require hospitalization to bring their breathing problems under control, either from an acute attack or because their overall condition degrades significantly over a period of time.

For those with Type 2 brittle asthma, their symptoms are fairly well controlled most of the time. What sets them apart from regular asthma patients are unexpected, abrupt attacks with extremely intense symptoms, similar to those that affect Type 1 sufferers. Often these occasions are severe enough to be life-threatening and generally require hospitalization.

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Hi axiom. Many thanks for the information. You are a star.

I had a bad night and day today. The Doctors couldn't make up the minds about sending me into hospital or not. As there is no sign of any infection and my stats are good.

But to my surprise and delight I I was allowed to go home. With a new inhaler and told that if things got any worse that I should not hesitate to call an ambulance.

Plus the nice Dr arranged an appointment for me to attend clinic tomorrow.

Hope to get some positive feed back help and answers. I just want to be able to breath and feel better. X

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