Severe asthma- family and friends misconceptions.

I was asked to write this blog post by Asthma UK as their report about severe and difficult asthma has just been published and the statistics are shocking. Asthma is not taken seriously or respected, some people don’t take their medication as they are meant to for a variety of reasons but this can be fatal. Those with asthma and those who know people with asthma need to understand just how serious it can be.

I consider myself very up to date with the latest asthma treatments, ensure I taken my medication as I am meant to and when I am meant to. I ensure I step up and step down my medication as my symptoms ebb and flow according to my personal asthma action plan. Even with my diligence to treatment and keeping myself well it is sometimes no where near enough and asthma wins over you, leaving devastating consequences such as death, the need for life support machine, very toxic drugs to relax the smooth muscle int he airways.

I have lived with asthma almost all my life. Over the years it has progressively become more difficult to control and severe which has impacted my own life and also my families lives as well.

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To manage my asthma I am in the very fortunate to have a team of specialists at the hospital who work hard to ensure I am on the best medication and most appropriate treatment aiming to control my severe asthma as best as possible. Despite this support and regular contact with the team my asthma remains severe to the extent I was put in a medically induced coma and was on a life support machine just under a month ago. I am sure if I did not have the team of specialists then there is a high chance my life would be very different if I was to have a life at all.

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Having severe asthma has resulted in many life changing circumstances from the sheer number of medications I require to control my severe asthma but then also medications to treat or prevent the side effects caused by the medication required to help my breathing. I currently take a total of 37 different medications, 14 of them are for asthma and 23 are for the side effects mainly caused by years of oral corticosteroids. I have also had to give up playing sport, change my career and now have had to give up my career, but the biggest impact has been on my family and close friends.

Living with severe asthma most of my life also means my friends and family have also lived with it too. They see how I try to manage my condition day to day, witness asthma attacks, call 999 for me when I don’t have the puff to call them myself, watch as helpless onlookers while an ambulance, with lights flashing and siren going, takes me to hospital as quickly as possible to stabilise the attack and make my breathing easier and then finally visiting me either in hospital or once I am discharged home. They see all this as well as my determination to manage my asthma desperately trying to ensure it does not take over and dictate my life. Despite witnessing all the above they accepted that this is what my asthma is like and that is that. An assumption was made that my asthma is as bad as it would get and my breathing wouldn’t get any worse than they have all witnessed. They thought this because I am under the care of a specialist asthma team who I can phone for advice whenever I am struggling which in my family and friend’s eyes means my asthma cannot get so bad that I may have a near fatal asthma attack.

My brother commented that he had become used to my asthma and almost complacent about how bad it could be. He said he has heard me speak recently of others who have died from asthma or friends who have been in a very serious condition but because I now have such a specialist team then I would be ok. It was everyday life me having severe asthma with the potential for requiring hospitalisation. He had taken this as normal and accepted it. So events earlier in the month were a huge shock and wake up call for the whole family because they had assumed I was safe with my asthma because I have some of the best people in the country looking after me and my asthma.

I look back now and see how my family normalised me being in hospital and me going to ICU so often which is really shocking. Going to hospital often should not occur let alone going to HDU or ICU that often. In any other health situation or if this was one of my siblings then it would not be just run of the mill and would be a life-altering event for the entire family.

My best friend who has known me my entire life and has been through thick and thin with me, seen me have asthma attacks and visited me in hospital never thought asthma could get as serious as it did during my last admission because I was under the care of specialists. She could not understand how asthma could get so bad when you are taking the latest medication that is available and have access to a team of specialists. She said she had never seen me look so unwell and vulnerable, not being able to do anything for myself reliant on others for everything.

The new report about severe and difficult asthma, which has launched by Asthma UK, makes me feel so fortunate to have such a good team and access to specialist asthma services to manage my asthma. Even with everything I have available my friends and family don’t fully understand how severe and life threatening asthma can be. I am sure if I did not have access to the specialists then asthma would have killed me. Everyone who may have severe asthma or difficult to control asthma needs to have access to specialists to help them live the lives they deserve to.

A year on monoclonal antibody treatment

I can’t believe it is a year since I started on mepolizumab (mepo) a monoclonal anti body treatment to suppress my eosinophils in a bid to help my asthma. The big question is as it helped?

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I am not sure. My consultant seems to think it has and I am to continue on it. My eosinophils have dropped dramatically however I am still on the same maintenance prednisolone dose and we have not been able to reduce it down and I am no longer working just now. I was in clinic last month speaking to my consultant as I was having second thoughts about staying on mepolizumab because I cant see a huge amount of improvement but he feels it is worth staying on it and I have been approved to stay on it for the following reasons:

  1. My blood eosinophil count has come down (I’m not sure of the exact figure just now but we are checking again next month)
  2. My peak flow although overall it is lower than it was the variation in peak flow readings is no longer there and it is a lot more consistent- I cant complain about this as now I know where I am each day compared with before where the diurnal variation was huge.
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  3. Although I have had a near fatal attack and several others requiring hospital I have been able to recover from them a lot quicker than before. My consultant described some of my attacks as spectacular (Im not sure how I feel about that).
  4. Chest infections and colds have not quite taken the hold that they were before and again recovering has been a lot quicker.
  5. My quality of life is better (although for me I am still really struggling with the idea of not being at work doing the job I love).

Looking at the reasons my consultant listed I really cannot complain and can see that the mepo has had an impact. It has not had the wonder drug impact that I hoped for and that I have read many have had but I am alive and have a great team behind me so really need to be thankful.

I did some work a good number of years ago for Astra Zeneca where I met some other asthma patients. One young lady I met had their life totally transformed by Xolair going form being intubated numbers times, not being able to work and very disabled by their asthma to having a full time job and minimal asthma issues. I think deep down part of me was desperate to have this effect. I remember thinking after I was told I would start mepo that I might be able to get back to the gym, start running again and playing lacrosse and golf but that has not been the case which is a bit disappointing for me but I was told not to get my hopes up too much.

Even though the mepo has not been the wonder drug that was going to transform my life I am so grateful to my consultant for being willing to try it and keeping me on it. Apart for the hopes of it transforming my life I was worried about the side effects it might have. On the whole I have really not had any significant side effects. I have been finding I get a bit of a local reaction for about 48-72 hours post injection where the skin is red and hot. Initially when I first started getting the injection I did get a really bad headache, backache and just a general feeling of being unwell. After about the 3rd injection this went away. I have found that if I am a bit under the weather in the days leading up to getting the mepo then I tend to get more side effects in terms of headache etc but nothing that has been so bad it is not worth getting the injection especially as I am not having to get up and work set hours etc.

I have come across different stories on social media about peoples experience of biologics but one thing I have found is the number of people weighing up the travel for these treatments. When you asthma gets to the severe end of the spectrum most are referred on to a tertiary centre where their care is managed and their local hospital is there as a support team but do not take the overall control of your management. There are not many tertiary centres so there is often a lot of travel involved. I am lucky that Id not have a huge distance to travel but I think even if I did I wouldn’t mind because I know the team are doing it in my best interests and the least I can do is travel although it may be more difficult when you factor in that you do have severe asthma which is already controlling your life but if there is a chance that this is going to help then the travel is worth it!!

Another discussion I had with my consultant was about new biologics that are coming out. He is hopeful that dupilumab may have its use altered and some asthmatics may qualify for it. Just now it is only used in adult eczema in the UK but in the States there have been people on it who have aspirin sensitive asthma which is what I have except that I am anaphylactic to aspirin and salicylic acid so fingers crossed this gets a green light at some point as we both think this might work well for me.

The use of these monoclonal anti body drugs is dependent on such specific criteria and the patient needs to meet them and the consultant needs to be able to provide evidence for it before you get the green light. Because of this many are not getting the opportunity to try it and see if it has an effect.

For me I did not match the criteria for blood eosinophils but my consultant was able to argue the case. He was able to show that the prednisolone I am on will be surpassing eosinophil production and if i was not on it then my count would be elevated but it is too dangerous to take me off them or down a significant amount just to get the blood result. I would say it is worth asking your consultant to see if there is potentially a way to justify why you need to try this treatment and then be approved for it. It is so frustrating that a drug you are trying to get off is the main factor to many not meeting the criteria, but if you came off it then it is so dangerous as your asthma can go so out of control without it. I can see why they have strict criteria because the drugs are really expensive as they are such targeted drugs but in time they will drop in price and hopefully the criteria for the drugs will also be more flexible too.

Overall I am glad I have had the chance to try mepolizumab and being able to stay on it. If I had not changed consultants I doubt I would even be considered for it which is a scary prospect as I have no idea where I would be with my health.

If anyone has questions about monoclonal antibody treatment please ask!!

Pollution and its effect on my asthma

It is well known that pollution makes asthma worse. There has been a lot of information in the press about this and how there needs to be low emission zones in major cities to try and increase the air quality. Recently an inquest ruled that the death of a young girl from asthma was due to pollution exacerbating her asthma which resulted in an attack that killed her. It is scary to see just what pollution can do.

I can see the effects of pollution on my own asthma. Since getting my smart peak flow meter I have been able to track my peak flow for a prolonged period of time. Previously I have always done my peak flow but did not record it (mainly because I am lazy and printing off a peak flow chart on paper was a faff and when I did print it off it would get wet as I keep my peak flow etc in the bathroom with my medication so I just gave up) so having the result blue tooth to my phone has been great.

I have had to ability to print off the charts month at a time or even week at a time if I want. The most useful thing I have found by doing this is the ability to identify points where my peak flow may have dropped or increased and then refer to my diary and see if there was anything that may have caused the dip.

For example the picture below shows my peak flow. The 2 yellow arrows mark when I went to London which shows a significant drop in my peak flow which then increased again once I returned home to Edinburgh. This drop was despite wearing a carbon filter mask to try and protect myself as much as possible.

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I am not sure what else I can do to try and protect my lungs from the pollution in London other than not travel there. The mask I use is high grade, I take my medication, I also try to make sure the windows are shut and I am outside as little as possible so I am not breathing in too much toxic air.

Conversely to this I was recently up in Thurso- just about as far north in mainland Scotland that you can go (except Dunnet Head) where pollution levels are very low I noticed my peak flow actually increased. Perhaps a combination of being at the far north of Scotland, away from major roads, away from major cities with large amounts of traffic and being right on the coast with sea air (sea air has historically been promoted as good for the lungs- it might be an old wives tale).

The chart below is my peak flow and the yellow arrow is when I was up in Thurso.

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I think from this I can clearly see the impact of air quality on my lungs. Edinburgh is a real mixed city as there are some areas which have horrific levels of pollution and other areas that are not so bad. I am fortunate in that I live fairly near the coast and not right in the city centre but it is still fairly polluted where I am.

What steps can I take to improve my lung health and avoid pollution?

  1. I would love to move away to the country somewhere near Loch Tay as I love it up there and the clean air would really benefit me. There is little traffic and no big industrial sites near by. Unfortunately due to the nature of my asthma this would not be feasible as there is no major hospital near me so if I was to have an attack it would be a long wait/trip to get help and to a hpspital
  2. Try and ensure I wear my mask when I need to so I am breathing the best air I can. Despite having a complex about wearing my mask I need to protect my lungs at all costs and if this means wearing a mask then I must.
  3. Keep an eye on the pollution levels and act accordingly. If I know the pollution levels are rising I should perhaps increase my inhalers to counter act the symptoms I may get (I will check this with my team before acting on this).
  4. Get out and about as much as possible down to the coast to breath in good clean air and not stay stuck in the city all the time.

Essentially there is no easy way to avoid pollution but I can see the detrimental effect pollution has on my lungs via my peak flow results. It would be wrong of me to recognise this and not act on it. I must get a plan and put it in place to protect my lungs from more damage which breathing in toxic air might do.

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(Me on the left wearing my Cambridge mask while in London at the Asthma UK Centre for Applied Research Annual Scientific Meeting)

SMC approves Benralizumab (Fasenra)

Today was a big day for many Scottish people living with severe asthma. Many of us live day to day taking medications that do not fully help relieve our asthma symptoms and keep our asthma under control. It can be very frustrating and scary to live day to day not knowing how you will be.

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In the UK medication approval is not universal. England and Scotland have different groups which approve or reject medications which could become part of the NHS formulary making it available to patients.

England have NICE- the National Institute of Clinical Excellence. NICE approved Fasenra earlier this year meaning it was available to patients who fit the criteria for it. However in Scotland we had a longer wait meaning many with severe asthma have been able to see the positive effects this drug has had on people in England knowing that they are not guaranteed it because the Scottish Medicines Consortium (SMC) has to approve it. The last monoclonal antibody Reslizumab was approved by NICE but rejected by the SMC so many were waiting with baited breath today to see what the SMC would do.

It was a huge relief today when I got a phonemail from Asthma UK to say it has been approved. This means there is one more drug out there for those with severe asthma to try and hope that it will be their wonder drug. The weird thing with monoclonal antibody treatments (aka the mabs) is that they work for some and not for others. Just because you qualify for them through your IgE or eosinophil count does not mean that it will make a difference. This leaves many feeling lost and wondering if there will ever be a break for them from living with daily symptoms struggling to breath something no one should ever have to do.

The below is part of the press release from Asthma UK which I contributed to about the impact that severe asthma has had only life and what the approval by the SMC means:

“My severe asthma leaves me gasping for breath, exhausted and unable to even walk down the road. While I’ve had asthma all my life, it worsened as I got older. I had no choice but to take long-term oral steroids at a high dose which has left me with terrible side effects including osteoporosis. I used to be sporty and had my dream job as a nurse but my asthma got so bad I had to give it up. This new drug could transform my life allowing me to get back into work and regain my independence. It’s high time that severe asthma was taken seriously and that everyone who needs this kind of drug is able to get it.”

I was also interviewed for the radio which went out across Global Radio Networks this evening which was also focused on living with severe asthma, the effects medications to date have had on me and what Fasenra could mean for me and many others like me.

I am really proud to have been able to share my story but also that there is light at the end of the tunnel for others. It finally feels like severe asthma is being recognised. It seems that asthma only makes the headlines when a young person dies from an attack which is catastrophic but asthma should not be in the headlines for this, this should not even be occurring but it is. Despite this asthma is not being recognised. Hopefully there will be enough coverage about the approval of Fasenra in Scotland and how many people it may benefit from it that asthma may get taken more seriously and there will be more funding available to help those with severe asthma whose lives are being dictated by a condition that is so misunderstood despite their own and their medical teams best efforts to control it.

For me I had hoped mepolizumab would be my wonder drug. I still hope that it will be but I am not sure. I am still reliant on oral steroids and not able to reduce my maintenance dose, I have had to give up work, have also recently decided to step back from some of my lacrosse commitments all because of my asthma. My best efforts to control it are not enough but there are limited medications available to me that I have not tried which could help me. With each new drug that is approved there is that little bit more hope that one day my asthma will no longer dictate my life and just be a part of my life that does not cause me any problems.

Asthma in the news

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Asthma has been in the news a lot recently, most of this has been reports on how awful the asthma care is for those with asthma in the UK.

It is not all negative and there has been the odd positive bit of reporting such as new drugs being developed or gaining approval for use from NICE or the Scottish Medicines Consortium.

Most written reports both negative and positive have one common theme which is the use of pictures. These pictures are not promoting good inhaler technique as there is a lack of spacer which is recommended in guidelines produced for asthma management. For anybody no matter how young or old when using a MDI (metered dose inhaler) inhaler also known as a puffer should be using a spacer device to ensure the medication in the inhaler gets into the airways and work where it is needed. Using an MDI without a spacer will often result in the medication being left on your tongue or the back of your throat and not in your lungs. The spacer will prevent this.

Asthma is so misunderstood as a condition. It is essential that media outlets use images which are in date and reflect the current recommendations made by SIGN, BTS or NICE who are the tasked with developing pathways for asthma management. The media using images which reflect correct technique won’t drastically improve the horrendous asthma statistics in the UK but it will make people more aware of the use of a spacer along with their inhaler rather than the inhaler on its own.

Small changes like this can help influence bigger changes in the future. If inhaler technique is correct then the lungs are getting the treatment they require to prevent the asthma from flaring up and therefore will in turn reduce asthma exacerbations, hospital admissions and even asthma death.

Please share this post as it is vital that the media start using new photographs with people using inhalers as recommended in current guidelines.

Having the support of your GP or Asthma Nurse

Having had asthma basically all my life one thing I have come to realise is the importance of your relationship with your GP or asthma nurse. For many they are the front line for you and your asthma care.

I am so fortunate to have a GP who is really understanding and although she finds my asthma baffling she will listen to me and help me when and where she can. Little things like making sure my medications are prescribed correctly, I get my flu jab etc. They also have various flags on their file on the system- this helps so much.

Many dread the phone call into the GP to try and get an appointment because their chest is not good but you have to get passed the gate keepers- the reception staff!!! Before the flags were on the system I used to have great difficulty trying to explain the importance of being seen promptly because my asthma goes off so quickly. It was a nightmare- I understand why they need to do it as appointments are short for the number of patients that need to be seen but when it is asthma it can be different.

After a bad experience not being able to get an appointment on the day because the reception staff thought it could wait, I ended up in hospital! During my follow up appointment with my GP which because I had been in hospital I was able to arrange via the reception staff, my GP was slightly irritated at me not being seen as it is important and could prevent hospital admissions.

Since that follow up appointment there is a flag which says if I am phoning in about my asthma I am to be seen by either my GP or one of the nurse practitioners who know my chest very well. There is also a flag that if I say I need antibiotics I can have a phone call rather than appointment and a final flag that if I feel I need to go to hospital they are to call the respiratory reg on call and arrange this.

Having these flags has made such a difference and offered a sense of security as I know if my asthma is bad then I will be dealt with urgently. Obviously if I call about something else I would need to wait just like everyone else.

I realise I am very fortunate to have all this set up. I wanted to highlight it so that others can ask their GP surgeries about this to help them manage their asthma better as it is a huge stressor when you asthma is bad and not able to get the help. Something so simple as a flag can make the world of difference.

New drugs, new start?

I haven’t written in ages and I apologise for that but I really did not know what to write and how to write without getting myself angry and upset as I feel the last 8 years have just been a total waste.

I wrote a while back about changing consultant and hospital because I was really finding the relationship I previously had with my consultant was no more and my health was getting worse, I was getting put on more and more drugs and constantly riding a rollercoaster of feeling well and being on high dose steroids to feeling rubbish because my steroids were reduced.

So lots has happened since switching consultant. My first appointment I finally felt someone was going to do something to help. I was put forward by my consultant at their MDT meeting to see if another consultant would agree to me being a candidate for mepolizumab. Due to the cost of the drug you need meet certain criteria and have a second consultant agree to it. Thankfully another consultant agreed and the wheels were in motion for me to start.

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I didnt really know what to expect. Its not like other drugs you get by injection like any sickness or steroids where you notice a difference pretty quickly. This one it can take a few weeks before you notice positive effects from it but Im not sure what I will feel and what the positive effects will be. Will it be the nights are better and I won’t wake up so much needing meds or will my peak flow be increased or able to do more during the day with less symptoms??

Time will tell how it goes. For me because of the steroids I am on they are going to use my maintenance dose of steroid a marker for effect of the mepolizumab so if I can reduce this then we can move forward and continue on the mepolizumab but if I cant reduce them without my chest getting worse then I won’t stay on it and will be back to square one and trying to find something else to help me.

Speaking to the nurse they seem to have had really positive effects and not many people have had to stop. Also the side effects have not been too bad apparently. A bit of a headache and back pain seem to be the most common. My head has been killing me but it is easing off and if that is the only side effect I cant really complain because a headache is the least of my worries as the pain and suffering from my chest over all these years far out weighs a sore head!!!

There is deep seated feeling of anger in me which I need to get over but I just cant shake this feeling of having wasted my time with my old consultant. Everyone told me she was the best but I guess the best is not always what works and it really didn’t for me. I asked so often to try different things anything to try and get some stability even asked to stay on the higher dose of steroid as I knew this was what my lungs were happy with but it was always a no and just had to persevere and would get there. Clearly that didnt work as every attack I ended up in ICU or HDU and so much time off work. If it was not for understanding bosses I would be out a job and have no purpose or aim to try and get myself well. I am really angry that it took a horrible admission to hospital and me essentially getting so upset that I was getting no where and people asking me if I had tried x,y and z and all I could say was no and they look quizzically at me like I am mad because my asthma is so uncontrolled yet I have not even been considered to trial some of the more medications till now.

I need to keep myself grounded though. Even though the results of this drug in others has been fantastic I really don’t want to be disappointed and pin all my hopes on it to then be totally devastated that it doesn’t work or it doesn’t work well enough to justify keeping me on it. Even with the best results there can be from the mepolizumab my lung issues won’t totally be cured as the years of uncontrolled asthma have caused a lot of airway remodelling and scarring which cant be reversed.

Fingers crossed the next three months are full of good things and I can stay on the mepolizumab as I desperately want my life back or even just some of my life back where I don’t have to spend all the time I am not working resting to make sure I am then able to work the next day.

Will keep updating as I go and if I see effects from it.