Under a month ago I was writing about how I had been a year on mepolizumab. The drug that I thought was going to be my wonder drug and make my asthma easy to control or so I thought. You can read the post here.
Part of me wonders did I know deep down that I would be stopping this treatment? I know in my last clinic I had asked my consultant if he thought I was benefiting from getting the drug. He outlined why he thought it was worth staying on it so we agreed I would stay on.
In just a few short weeks after that clinic and chat the words came out my consultants mouth that I didnt want to hear. He said “we are going to stop the mepolizumab treatment because I was not getting the results he wants and while on it I have had some of my most severe attacks”. He felt he could not justify me staying on it as I was still struggling so much and my attacks were getting worse again. He is also concerned about all the other issues I am having with my body which he cant say are due to the mepolizumab but equally he cant say they are not. He is worried about the unknown side effects from the drug due to it being so new.
To say I am gutted is an under statement. It was meant to be my wonder drug. It wasn’t as much as I try to convince myself it was working I cant be sure. It did reduce my eosinophil count which is the only result we can see conclusively that changed once starting it. Otherwise the things like recovering from attacks and bouncing back from colds quicker I cant say are due to the mepolizumab or if they are due to not working in the hospital. I cant say either way. I wish I could say it was due to the mepolizumab but I cant.
So what now??
This was the first question I asked my consultant as once again I feel like I am in a constant state of limbo, reliant on oral corticosteroids which have the be reduced but any reduction exacerbates my asthma again so I will be searching for that drug which can offer me stability. If only prednisolone did not have such awful side effects and you could stay on them with no worries- that would be magic!!
The good news is that there are new biologic treatments out there. There is Fasenra (benralizumab) which I doubt I will be eligible for. I am excited about the results people have been getting from Dupixent (dupilumab). In the UK dupixent is currently only allowed to be used in patients with skin conditions but over in the States there has been a lot of success for people with aspirin sensitive asthma. I hope that perhaps dupixent might be approved for use in asthma because I think the main issue which makes asthma control so hard to achieve is being anaphylactic to salicylic acid- a compound of aspirin which naturally occurs in just about everything.
Until then I just need to sit tight, do the best I can to keep my body as healthy as possible, minimising the risk of attacks and focus on getting better and have a positive mental attitude.
How often do we read or hear that asthma is “just asthma” and an inhaler will fix it all. Everyone knows someone who has asthma but not everyone knows how bad asthma can be and that it kills people. 3 people die each day in the UK compared to the 10 across the United States. I am not saying that 10 is acceptable but compared to the UK it is far better. In fact the UK has the worst asthma death rate for a developed country.
The big question is why do we have such bad statistics?
We have the National Health Service, Asthma UK, 2 dedicated research centres- the Asthma UK Centre for Applied Research and the Asthma UK Centre in Allergic Mechanisms in Asthma which is providing asthmatics with cutting edge technologies and trying to get a better understanding of asthma, the different types of asthma and best ways to manage it. Despite having all this, asthma as a condition is horrendously underfunded when you compare the funding given to cancer or heart disease. Asthma is way more prevalent yet still not fully understood. To begin to understand asthma, and the different phenotypes (types) there needs to be a huge input of money much like there is for other conditions.
Why is money not being given to improve outcomes of those with asthma?
I believe that we as asthmatics have a role to play in this specifically the role that we play on social media. Over the last decade social media has exploded. Everyone (although there are some exceptions) uses social media of some sorts wether it is Facebook, Twitter, Instagram or LinkedIn. It is used for both social and professional use and although there are some restrictions in place you can post pretty much anything and it can be available to most who are looking for it.
I use social media in a number of different ways. Through Facebook, Instagram and my blog I can share my advocacy work and awareness about the condition, how I deal with it both the negatives and the positives, and also new medications that are coming out as well. Twitter is an excellent vehicle for knowledge exchange specifically for research as you can share snap shots of what is happening and not need to search a website and read through screeds of stuff.
On Facebook one of my roles is that I moderate and administrate several support groups for those with asthma, severe asthma, difficult to control asthma etc. I feel very honoured that I have been asked to become a member of the admin team for these groups however it is tricky. Many of these groups can be accessible to anyone who wants and people can post what they want, equally they can post what they want on their own pages too. I believe this is where asthma or more specifically asthmatics get a bad reputation and unfortunately when someone reads something in one place then an entire groups can be tarnished with the same brush.
What am I actually talking about? I often get into trouble or arguments with people because they are not acting responsibly and not taking their condition seriously. This would be fine if they were keeping this to themselves but many are not, instead it is being shared on social media. For example:
“my breathing is really bad and having to use way more nebulisers than I should so need to go to hospital but I have stuff to do first”
This type of thing I come across on just about a daily basis and it makes my blood boil. We have a role wether we like it or not to take our asthma seriously and get help when we need it. Part of me feels that anyone on the outside seeing this would think why should be invest lots of money in asthma when those with asthma are not being sensible with it.
I firmly believe if you need to get help you need to get help, a shower, shopping, housework etc can wait. If you don’t wait you might not be there to do it in the future. No one likes going to hospital and many with severe asthma spend a lot of time going to hospital resulting in admissions and plans changing. It is not ideal but it is what it is.
I have had 2 friends die from asthma and know of many others through my work with Asthma UK and being involved in support groups that have also died. For some of them the reason they died most likely could have been avoided had they got help when they first started feeling unwell. I am sure if I was able to ask them they would say they wished they got help sooner as they might still be here now.
I use the examples of these 2 friends in response to comments people leave like above. This will often cause many to get angry with me but if you are unwell you need help there and then. People do not see this and expect sympathy and attention but if you do not act responsibly then you are not going to get sympathy. If you really want to live then you need to go and get help. There have been times when I have just wanted to pretend asthma is fine and I don’t need help because I have something on and don’t want to miss it but then I think of Dawn and it jolts me back to earth forcing me to get help.
Wether we like it or not we are ambassadors for the condition. The outward projection we give I think has a large part of why asthma is not taken seriously. I am blunt and will say to people that if they want their asthma to kill them then they are going about it the right way. It is very blunt but it is the reality.
I know for sure there will be people who read this and have posted irresponsibly who will be angry. I do care that they will be angry but at the same time I don’t because what we post on social media can influence others with asthma who may be new to the condition and they don’t know any better and think what they read is ok to do. Remember asthma can kill anyone not just those with severe asthma so those new to the condition may see stuff and think because someone who has had asthma longer than they have must know best and it is ok but it is not. We must lead by example and if we are not going to then we must keep this private and to ourselves.
So how much is social media playing a role in the reputation that asthma has. I will continue to try and get people to understand why asthma must be taken seriously and that when you need help for your breathing you need help and should not go and have a shower etc first because you think this is the priority.
I am an ambassador for asthma as we all are. Asthma needs to be respected much like other chronic health conditions are and it is not acceptable to post irresponsibly on social media for others to see and be influenced by. We desperately need more funding to understand asthma better and if we can do our part to help achieve this we might get there quicker than we are now.
Rant over but bottom line is: social media can be toxic in how people view asthma because of what those with asthma post for the public to see.
Today has been one of those days where it feels like there is no air. You are left gasping for breath just moving a few meters and even sitting still feels like you are trying to breathe through a pillow. It is horrible and unrelenting. Not only is there no air and very humid the pollen count is through the roof, pollution is high- just about everything thrown in that an asthmatic does not want to see in the weather report.
I feel like I have clock watched all day willing the hours to go by until it is night and there might be some relief as the sun goes down.
But what do you do on days like this?? What can you do to take your mind off the effort that breathing brings when even eating and drinking is an effort.
Today I have just made sure I have everything within my reach, nebulisers, tv remote, phone, water. Trying to limit the activity and not making any movements that can be avoided. It is tough as you always think you have everything to hadn’t and then you don’t.
I have been lucky today that I can watch the lacrosse European Championships as it is being streamed live which has passed the time very well. I have found I have been dozing on and off too. I am still so grateful that I have my electric bed so I can prop myself up, and relax easing my chest sightly. I am also super fortunate to have a Dyson Cool Air Fan with filter which has been life saving today and on previous warm days. I have had it on pretty much permanently when I am in as it does offer a lot of relief and is not just blowing warm air around. It is actually cold air it blows out!!
When the weather is this hot and muggy I find eating a huge difficulty. I have no appetite and anything substantial that I do eat I find myself feeling like I am choking as I just can’t breathe properly. This is not isolated to when the weather is like it is but also when I am unwell with a chest infection or in hospital post acute exacerbation. I have found my solution to this though!!!
Strawberry Yazoo is my go to drink. Whenever I am not great this is what I like to have. It has all the pick me ups you need but also does provide you with some nutritional benefits too- although you should not use them as a meal replacement I do find that when my breathing is bad these are the best things. I also always have a fridge and freezer full of fruit pre cut or ave berries etc so I have eat them easily and they are not too bulky, the freezer always also has ice pops, ice cream, ice lollies because you just need them to cool down but also nebulising a lot dries my mouth out and makes everything feel funny so the coldness is really nice on my mouth too.
A lot of people have been messaging me today with their tips and tricks for the hot weather. These include:
- Bowl of ice in front of a fan
- cold showers or bath
- driving in the car with the air con on
- a cold towel on the back of your neck
Others have also suggested going to hospital but I just think that would be as bad except they could give me IV mediation to make my lungs happier but it will still be airless and really hot in the wards- in fact probably even hotter than it is in my flat and then you add in lying on a plastic mattress. I think I will stay put unless things do get very difficult and I am getting close to my limit of what I am allowed to do at home. One friend did say hospital wouldn’t be that bad because ICU has air con!!! I would hope that I would not need ICU (even if air con seems like a nice idea)!
Any other ideas people have for staying cool and making the lungs feel a bit happier please share!!
It is hard to believe that I have been involved in the Asthma UK Centre for Applied Research for 5 years now. Time has gone so quickly. I have had some amazing experiences as a result fo being involved, met some wonderful people and made friendships that I hope will last for a long time yet. I say this often but AUKCAR has been life saving and life changing. I have no clue what I would be doing if I had not had that chance meeting that set about a series of events which has put me where I am now.
The annual scientific meeting held in London this year was a celebration of all the hard work and research that has been done to help benefit those living with asthma or affected by asthma. Asthma UK originally funded the centre for 5 years so we had to reapply for further funding for another 5 year period. It was announced during the meeting that we have been awarded funding for the next 5 years which is incredible.
I love the ASM’s because it is a chance to meet people face to face. The centre is virtual so a lot of the work is done via email or teleconference so seeing the people you work alongside is not a common occurrence. It also gives us the chance to meet other members of the patient and public involvement (PPI) group.
This years meeting I was speaking twice and presented a poster too. For the first time I was presenting about an academic bit of work on my own which I was a little nervous about but once I got up there it was not too bad (also the team who were part of the work were in the audience so had to get it right). The poster was also related to the piece of work too- evaluating the impact of PPI!!!
The final talk I was giving was when I fell to pieces a little. Not quite as bad as 5 years ago when i was in tears and the audience were in tears, it was only me this time. It was the talk I gave along with 2 friends and PPI colleagues at the NHS Research Scotland Annual Conference. To summarise the talk was originally celebrating the NHS at 70 and we gave our accounts of how medicine has changed with the NHS. Allison started speaking about her experience fo asthma with her mother, then Elisabeth spoke about growing up with the NHS and then I spoke about the NHS today and changes in medications. (I am going to write a full blog post dedicated to our talk in the next week or so).
When I originally gave the talk in October I had not long changed consultant, had started new medication for my asthma and things were looking up. This is part of my original talk:
“I have been in and out of ICU and HDU more times than I can count, it has almost become routine when admitted to hospital now. Once stable I would then be moved to the ward to further stabilise before being ready to go home, once I home I would then begin the arduous task of weaning down my oral prednisolone dose to my maintenance. This I now hope is a thing of the past. I am 4 months into a trial of mepolizumab and it has had so many positive effects. I have not been admitted to hospital since April and am on the lowest dose of oral prednisolone I have been on for as long as I can remember. It has been truly life changing. Advances like this have given not just me but given others their life back. If it was not for research, mepolizumab would not be an option and I would still be on the rollercoaster I was on before”.
It was only just before I was going to give the talk at the ASM when I realised how much has changed in such a short space of time. Never would I have thought when I first wrote that talk that life would have changed so much.
I have been back in hospital and intensive care, I have not got back down to a lower dose of prednisolone and I am no longer working. I am still on the mepolizumab injections as it has reduced my eosinophil count. It highlights just how fickle asthma can be and how you can never predict what the future will hold.
In a way I think maybe it is a good thing that when giving the talk at the ASM I was able to tell the audience what I had said back in October and then tell them how life has changed in a matter of months. No one unless you’re living with it can really see the unpredictable nature of asthma and how debilitating it can be. Even with the best plans and management it can still rip the carpet out from under your feet. The emotion I showed on stage is the emotion I try and keep buried down because as it does is remind me of what I am not able to do. PPI has given me so many positives but there is still the longing for the life you want or the life you once had.
Having a platform such as the AUKCAR ASM or the NRS gives the opportunity to show everyone what is often hidden behind closed doors when it comes to asthma. It is so misunderstood and if people who struggle to deal with controlling it don’t speak up then the perceptions of asthma will never change. I hope that some of what I do will help make a change and help researchers, Dr’s, nurses, other health care providers and the general public about asthma and what it is really like.
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.
No one can have missed the news recently about the NHS Long Term Plan for NHS England. Even those of us not living in England can’t miss it!!! I know I live in Scotland so it does not impact me directly but I am pretty sure the Scottish Government will take on a lot of the plans for the Scottish Health Service that are talked about in the NHS Long Term Plan.
The biggest thing that I have noticed in the news, on social media from news agencies is surrounding smoking and the help that is going to be given to people who smoke that are admitted to hospital. Any time I see anything about the plan this is what I see and it just angers me so much. I know I am not alone either as have spoken to many people who are in a similar position to me with their lungs that are frustrated and angry about it to. For me what it me most was that along with the national news agencies and NHS health boards tweeting about it, my own local health board posted (once again) about how they were going to give smoking cessation help and advice to patients admitted to hospital.
I know this is a very good step etc and that people who smoke should be offered help to stop however on a daily basis just to get into work I run a gauntlet to try and avoid breathing in any smoke. The NHS made a huge deal about how their sites were to be no smoking sites and that smoking is banned on their sites yet nothing is done to enforce this. They have signs everywhere yet those who smoke just stand by them and light up. Some don’t even wait till they clear the door before they light up. This is not unique to me and the hospital I work in. I regularly see on different forums asthmatics saying they had to go to hospital but just trying to get into the hospital left them in a worse off state than they were when they arrived in the car park etc because of all the smokers they had to pass.
Until you have put up the fight of your life just to get a breath in you cant understand what it is like. It is one thing when you may have been a bit silly and done something stupid which provokes an asthma attack but when you have done nothing other than try and get into work and you end up in intensive care it can leave you feeling really angry and bitter.
What I would love to see and so many would love to see is the smoking ban being enforced or at least a shelter to provide those who smoke a place to go and then leave areas such as the main doors to the hospital as a safe zone. Also when there are the groups of people congregating outside the doors of the hospital- many of whom are patients why are the smoking cessation nurses not down there encouraging them to not smoke or at least smoke in an area which won’t risk killing people.
What is worse is that the main doors to the hospital I work in which are always flanked by people smoking, are over looked by 3 of the four bedded bays in the respiratory ward so during sweltering summer days you cant have the window open because you end up with a room full of seconds hand smoke.
I am not alone in how I feel and what I think which is why I am writing this. I am at a total loss as to what to do because everywhere I try and get the issue addressed cant give me any answers. Is it going to take someone dying from an asthma attack as a direct consequence of people smoking outside hospital doors for action to be taken?? I have got in touch with ASH, Unison, local MP none of whom could give me an answer or willing to take action.
My working hours are 9am to 3:15pm, I have a blue badge due to the severity of my asthma so can park close to the hospital however I have had to start arriving earlier and earlier so I can have the time to wait till the doors are clear of people smoking and then take my chance. This time is different each day but it shouldn’t need to be done. There is then the reverse when it comes to leaving work however I tend to end up just trying to get out and get to my car, once in the safety of my car I can have some nebulisers to alleviate the effects the smoke has had on my lungs. I just wish those who smoke understood what they were doing to others.
It is so hard to see so many struggle. I have read how people feel like turning back and missing their hospital clinic appointments because of people smoking at the doors and the risk this poses to their health. This should never be a choice that someone has to make.
It would be great if others could share this and try and get change to happen.
If the NHS are committed to help people stop smoking, then they need to be down there with those who are smoking not up in offices making plans. Smoke is not just effecting those smoking but also others around them and not only those with lung disease either.
Please lets try and get things changed. I don’t want to risk losing my job (which could be a real possibility) because I have once again ended up in the intensive care unit as a result of people smoking where they should not be smoking.