When is it going to start working??

One thing I have found since starting mepolizumab is I am constantly questioning myself and am almost preoccupied thinking about what results I may see and how my asthma will improve.

Its hard because with this drug unlike others there is no knowing when you will start getting the benefits and if you will get the benefits. If your chest is tight and you take some salbutamol your airways will relax and you can breath again without so much effort, or if you have a chest infection and given high dose prednisolone you notice the effects of it both positive and negative (I’m talking about the insomnia, restless legs, hunger) but with this I have no idea when I might start to feel better.

I track my peak flow and keep thinking I am seeing it trend upwards and wonder if this means the mepolizumab is working but then today I came crashing back down to earth. It was a bad night- up every hour, coughing, wheezing and getting more and more irritated with the noise coming from my chest. I knew before I blew my peak flow and it would not be good and I was right. It dropped- a whole 150l/min.

I know that just because of the mepolizumab I am not always going to have great peak flows and my chest will still have hissy fits but I guess what I am struggling with is knowing if my chest is just more stable (I have not been allowed to drop my steroids yet either) or its more stable because of the mepolizumab. Its a bit of a guessing game.

By the time I have my next injection in a few weeks I will have a lot more data and will have been able to capture a month of peak flows 3 times a day and will be able to get the average peak flow compared to previous months.

For now I guess I just need to watch this space!!

World Asthma Day

On Tuesday 1st May is was World Asthma Day. I normally do something during the day, or post a video etc raising awareness about asthma, how serious it is, how  critically under funded research into asthma is. This year however I didnt do anything I just wasn’t well enough, my chest was far from good and lacked any ability to concentrate and focus on anything, mainly due to the high doses of prednisilone which leave you with a mind that has been put in a blender and constantly mixing your thoughts up and also due to the lack of sleep again thanks to the prednisilone but also my breathing has been getting worse in the late afternoon, evening and into the night making sleep difficult.

But World Asthma Day 2018 was recognised by Asthma UK with a huge thunderclap on how to deal with asthma attacks which reached far and wide across social media. However there was some very disappointing news also announced which is devastating and really makes you think how, why and when will those in power do something about it.

What Im talking about is the UK’s statistic on asthma deaths.

World Asthma Day 2014 saw the publications of the National Review of Asthma Deaths (NRAD) which showed the devastating numbers of people dying from asthma but also that over 2/3 of those deaths would have been preventable had they received the correct asthma care including having an asthma action plan in place, having regular asthma reviews and also correct inhaler technique. The publication of NRAD was meant to be a turning point in asthma care given the shocking statistics. I remember at the time thinking it was bad and that so many people shouldn’t be dying from asthma so you can imagine my shock, upset, dismay when I woke up to hear that asthma statistics have not got any better in the last 4 years in-fact they have got worse. Asthma deaths are 20% worse than they were 4 years ago making asthma statistics in the UK as the 5th worst across Europe and only one of three countries whose death rate increased rather than decreased. It is really shocking but then I sit and think a bit more about it and am I really surprised? I don’t think I am. I didnt think the rate would have increased as much as it has but if Im honest as a patient I really don’t see any changes that have had a big impact on asthma management, and if there are no changes there then there won’t be much of a change in the statistics.

As a patient who has asthma and does use a variety of NHS services because of my asthma I have not noticed any changes in how asthma is managed and monitored. I know my asthma is not run of the mill asthma and is more complex therefore GP’s and asthma nurses in primary care do not have a lot of input into my care other than my annual asthma review which the asthma nurse does at the GP survey. However the review tends to be me updating them on the new research that is out and what new treatments are available. I am often told that I know my asthma better than anyone so they are going to let me self manage but will be there if I need them. I understand why they do this however as a life long asthmatic and a very difficult to control asthmatic I cannot remember the last time I had my inhaler technique reviewed. I don’t think I am doing it wrong as take my inhaler the same way I always have. I also don’t have a written asthma action plan. I have bugged my (now old) consultant for one because being on maximum doses of inhalers I don’t have room to move should I get a cold or chest infection. Now that I am going to have a different consultant who i hope to have a better relationship with and will work with me rather than against me or just not work with me at all leaving me to do most of my management and hoping for the best (mostly I think i do the right thing!). But this got me thinking, how many other asthmatics like me who are difficult to control are just left to do their own thing because the asthma nurses they see say the same as mine that they are far more knowledgable than they are.

One of the other problems I see often and I think is a potential barrier  to reducing the number of deaths due to asthma is those who have asthma give it the respect it deserves and be sensible with it. Due to the difficulty I have with my asthma and the isolation I feel as a result of it I am in several support groups for asthma, brittle asthma and difficult to control asthma. It is here where you can chat to people who know exactly how you feel, how debilitating it is and the frustration  you feel when you try to do everything right but still your asthma is not behaving.

These groups are a great source of support however there is one very concerning theme which keeps recurring which no doubt is also a factor for so many asthma deaths and this is not getting help early.

I will often see posts made by people saying they have been using whole inhalers in a couple of days, or they are struggling to talk and having an asthma attack and they don’t know what to do. In these groups we do not give any medical advice but would suggest the person concerned follows their asthma action plan to which some would reply saying they don’t have on, or that they go and get seen by a GP or hospital. Again some group members would respond saying the GP does nothing except give them steroids or send them to the hospital. There is also the situation at night when GP practices are closed so you need to phone NHS24 and they will assess if you need to be seen by a Dr. Many people again don’t see the point in going to out of hours because they don’t know you so wouldn’t be able to do much. It really frustrates me when this happens. I can understand that asthma is very tricky to deal with as there are so many different phenotypes so seeing your own GP is preferable but it won’t always happen that way and more than likely it is during the night when you start struggling to breathe.

Now for the last, most serious, and riskiest behaviour that also occurs in these groups which could quite easily cause death. What am I talking about is when people post photos of their oxygen saturations or heart rate accompanied by a comment about how much they are struggling and finding it difficult to talk and don’t know what to do. Again naturally you would offer support and see what they have already taken, followed their action plan and if all this has been done the next step is to go to A&E to be reviewed, have their chest sounded and some treatment if needed to get their chest and asthma back under control. The problem occurs when you have given them some advice and recommendations like they asked for however they don’t take it. Many say that going to A&E is a waste of time because they get told their oxygen saturations are ok and their chest is wheezy but they will be ok. They may be given some nebulisers and prednisilone and allowed home. They see this as a waste of time as some feel they can do everything they are being given in A&E. They don’t see the value of attending as they see it as just getting some medication but actually the Dr or nurses are assessing them to see how much effort they are putting into there breathing and if they are using their accessory muscles to help, they will also have bloods taken which can show if they have any infection and require antibiotics. So it might not seem that much is being done but there is a whole assessment taking place. Then there are another group of severe asthmatics who won’t go to A&E early as they feel they are always up at the hospital being admitted for their asthma or being seen in outpatient clinic so they want to maximise their time at home so will stay there until they are really struggling which is when it gets dangerous as an urgent ambulance is often required and the resus room is on standby for you so you get treated straight away and stabilised before moving to a ward. I don’t think people realise that by staying home longer they are taking a big gamble that they will okish by the time the ambulance arrives and takes  them to the hospital. The longer they leave it the longer and harder it is to get back to baseline and the more medication to help relax the constricted airways. This also means that they will require additional medications to treat the asthma and any infection present plus more medications for the side effects of prednisilone.

By delaying when you decide to go and get help because your asthma has got more difficult is critical because you don’t know how severe the attack may be and if your out with a bad chest you may be exposed to triggers and because your not well your airways are going to be more sensitive.

I guess the message I am trying to get across is that no matter how busy you are in life or how much you feel you spend off work and in the hospital nothing makes up for not having a life which is what will happen if you don’t go and get help early for your asthma.

My Fight Against Asthma- the app

Living with any chronic health condition can be tricky. Not only dealing with how you are feeling on a daily basis but everything that goes with it to keep yourself well- the medication, self management plans, anticipatory care plan, Drs appointments, hospital appointments. This is just a small selection of some of the things you need to juggle and remember to achieve the best possible health you can for yourself.

When my asthma was very controlled and not that bothersome all I needed to keep track of was my peak flow diary and making sure I had enough of my inhalers. But now it is a totally different picture. I have a folder full of various documents to keep track of what is going on and who I am seeing when. It can become very confusing and often things do get forgotten. Despite my efforts I have never found an easy manageable way to keep everything organised and in one place, but that was until now. In the very early hours one morning I stumbled across a post online advertising My Fight Against Asthma app which aims for the user to have an easy place to store everything about them and their condition. The creator was looking for people to test the app which I was keen to do. I have now been using the app for just under a week now and have found it one of the best I have used.

Why do I feel it is one of the best? Because the creator of the app suffers from a chronic health condition himself so has first hand experience of the difficulties conditions can throw up and also what people want to be make living with their condition easier.

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Who is behind My Fight Against Asthma??

Heres is the developers story:

“I have Cystic Fibrosis and I got really sick a couple years ago. I stayed sick for quite some time so last March 2014 I decided I wanted to start learning how to make apps to help people with CF. I released my first app (My Fight Against Cystic Fibrosis) in October 2014 and then wanted to expand the “My Fight” series to help other communities. I reached out to a few different communities that had some type of illness and I got the best response from the Asthma community. I then quickly got a group of people together to help me better understand how asthma is treated and what kinds of things they track and would like to see in an app that they could use daily. I started designing the app, got it approved by the group that I put together, and started programming it in February 2015. I wanted the app to be something that would help patients manage their health in a more convenient and efficient way. The best way I found that to be is to directly stay in touch with the patients I’m making the app for and develop the app around their needs and requests. Instead of an app made by a pharmaceutical company I wanted to develop an app inspired solely by “the people” trying to help “the people” of the Asthma community.”

Over the years I have tried various apps which have been produced to try and keep track of what is going on with my asthma but have found them all very restrictive in what they can offer. Looking back I wonder if this is because they are created by companies in association with their pharmaceutical products and don’t have much knowledge about what the needs to the person is.

What makes this app so good??

It is user friendly and easy to understand. For me a couple of functions stand out which no other apps I have seen have. First you have tabs to record all different areas of your asthma.

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Recording peak flow is one thing every asthmatic should do almost from pre diagnosis stage. This section of the app I particularly like because not only can you define where your red, yellow and green zones but you can input comments about what action to take when your peak flow results falls in a certain zone. These comments can be specific to you rather than the more generic plans which will often instruct you to increase you inhaler and seek medical attention (or along those lines). Being able to do this means those with slightly different action plans can input their individual needs.

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Another aspect of the app is that you can set reminders for a variety of different things: medication, appointments and peak flows. You can be alerted by setting an alarm in the app to remind you to take your meds or when you have drs appointments. there is also a section for knowing when to request a repeat prescription.

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As the app is still in the development stages functions are being altered to make them really fit the needs of those with asthma. Having patient input while designing this app I think has made it stand out from other apps. I cannot wait till the app is released as I think it will be a very useful tool for those who find it hard to keep track of everything but also those who are newly diagnosed or people who have trouble getting into a routine and remembering to take their medication. Setting alerts can prompt you so you never miss a dose.

If you are not sure about what information to put in the various sections of the app such as the peak flow ranges you can speak to your asthma nurse for help in determining what is needed.

Are you interested in this app and want to test it too leave a comment on this post and I will pass it on.

(I do want to say that all the thoughts about the app are my own!)

 

Botched asthma diagnosis…

Nothing like the sun newspaper to come up with a good headline:

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I may not be totally accurate in my view that for a long time asthma was a bit of a buzz word within the medical world. From reading and talking to different people it appeared that often people would go to their Dr because of a prolonged cough of some viral wheeze and come home with an inhaler and asthma diagnosis. I admit this is a huge assumption and there will have been more supporting evidence but it almost seems over recent years there has been an epidemic of asthma diagnosis

However last week NICE (National Institute for health and Care Excellence) published a draft report suggesting that over 1 million people in the UK had been wrongly diagnosed with asthma. That is 1/5 of the 5.4 million people who have asthma could actually not have asthma. I feel that if asthma statistics are not shocking enough lets just add some more stats and make it even worse.

The problem with asthma is that there are so many sub types, different phenotypes, different symptoms, triggers and so on and so forth. There is also no hard and fast rule of how to diagnose asthma. There are rough outlines for example recording a peak flow diary for a few weeks to see patterns and changes and depending on the result of this an asthma diagnosis can be made. However many people will present acutely with breathing difficulties which need to be treated first and not wait to do a peak flow diary. Due to the pressures on GP’s they do not have the time to spend with a patient making regular appointments to monitor them over a period of time before coming to the conclusion that the patient has asthma. You can read a small bit about this in one of my guest blogs by Laura (can be found in left side tab under Guest blogs) where she talks briefly about being diagnosed with asthma.

When I heard about the draft report from NICE part of me thought perhaps I could be one of those wrongly diagnose but that is very much wishful thinking. I think after 27 years of asthma, 11 years of brittle asthma, countless hospital and critical care admissions they would have worked out if I did not have asthma. But one can dream in the hope of one day not having asthma!!!

I can’t imagine the emotion and thoughts going through some peoples mind about wether they have asthma or not. I worry that many who are not particularly symptomatic and use inhalers regularly will stop using their inhalers because they may assume they don’t have asthma. This could potentially cause a huge problem and the aim of reducing hospital admissions due to asthma and deaths due to asthma may not decrease but might in fact increase as a result of many people hearing or reading shock headlines such as the Sun produced.

Asthma is such a difficult condition to have and to monitor because of the sheer numbers of people who have asthma.  My thoughts about why statistics surrounding asthma are so bad because it is a condition which does not cause a immediate deterioration if medication is not taken. To pick another condition such as diabetes, there is a very measurable way to see impact of medication. If a diabetic does not take insulin they will see very quickly their blood sugars increase and develop unwanted symptoms whereas with asthma if someone who is well controlled stops taking their inhaler there is no immediate effect which I believe could contribute to poor compliance as the effects of the inhaler would only be seen if the patient was subjected to a trigger.

When NICE put out the draft report about the possibility of so many people being wrongly diagnosed with asthma I was called by Asthma UK to do a radio interview about it. I was not able to participate in this unfortunately as it would be a chance to emphasise the importance of continuing medication even if you are not bothered by your asthma as the reason you are not bothered by it is because you are taking inhalers. I am glad in a way I was not able to participate in the interview because once I gave the report some thought it dawned on me that here in Scotland we do not use NICE guidelines for conditions and management but instead use SIGN who have not issued any reports about the possibility of inaccurate asthma diagnosis.

There does need to be a more robust and universal method of diagnosing asthma but I think this is a very difficult task to succeed on. Due to the nature of asthma as I said before there would need to be numerous different guides depending on the subtype, triggers or symptoms an individual suffered from.

in the meantime I can only hope that those who are in two minds about their asthma seek medical advice before stopping taking their treatment. It is a huge fear that this report will cause a lot of people to become unwell and possibly end up needing hospital treatment due to not taking their medication. It will be interesting to see in the future the impact that this has had.

Inhaler Technique

This is something that I wouldn’t say bugs me but it is a gripe.

When I go to have my asthma review with my health centre (which I think is a waste of time- because not wanting to be big headed but I end up teaching them more about asthma than they tell me!!!) But to the point. They always tick on their sheet that they have done the inhaler technique review. I have never once been asked to show them my inhaler technique. I think it is possible that they think that because I have taken them for so long I must know how to take them. But is think that the longer you take them the more your inhaler technique should be reviewed as you are likely to develop bad habits. When I think about it, it is not only at my health centre the hospital do it as well. There have been so many times i ahve seen such bad techniques and jsut want to go and tell people that they doing it wrong and how to do it but i always refrain.

Here are some of the techniques I have seen!

1) giving it a good shake then holding it about5 inches from your mouth and squirt and try and catch it (no joke catch it. the person head moved forward as though they were catching somethign in their mouth!!!)

2) a good shake given again and holding the inhaler jsut outside an open mouth and giving four puffs and keeping ones mouth open and i could see the inhaler mist out the side (well not mist but you know when you can see inhaler when you spray it!)

3) a good shake and the inhaler held upside down and puffed into the mouth. the mouth was closed but immediatly opened after the puff.

4) the inhaler is sprayed as the person is breathing out! so it came out the top!!!

These are just a few of the different inhaler techniques I have seen. I always have tried to make sure myinhaler technique is right. I know it probably isn’t and I have probably developed bad habits but I’m only human. You cant blame people for having bad inhaler techniques because if others experiences are the same as mine then you don’t get taught how to have a good technique and what is a bad technique.

I know it is difficult to know the right way and wrong way for all the inhalers. I have three different types of inhaler and all have different techniques of using it which is a bit confusing and when your in a rush you don’t always have time to stand and breathe out deeply and then in and take inhaler and hold your breath and then repeat this if you have a few puffs to do etc.

This is a pic I found on the internet when looking for different inhaler devices as there are so many but i think its quite a good poster!

Peak flow is also another one as results can vary hugely depending on your technique. Also I haven’t seen random techniques for this as you don’t tend to do a peak flow on the bus or up town shopping!!!!

I know there are some followers of this blog from other countries and wondered what you healthcare providers are like with inhaler techniques and things?