Inhalers in Schools

Last year the law changed which allowed schools to keep inhalers for emergencies in school much like an epicene etc. Until then an asthmatic child had to have their own individual named and prescribed inhaler which was carried on their person or kept under lock and key- something which is not useful in an emergency situation when treating an asthma attack is time critical. The sooner the attack it treated the less risk of adverse effects happening and potential hospitalisation.

I must be honest and did not think much about the inhalers in schools law being changed mainly because I have left school but also because this was never an issue for me at school. I was fortunate that I had great support with my asthma in school. I was at boarding school and kept my inhalers on me, or in my dorm room or the teacher had it during games. If I had an attack I would go to the school Medical Centre to be seen and would see a Dr if needed. The support I had was second to none. My housemistress even drove behind the ambulance I was being taken in to hospital in the middle of the night. I was never alone with my asthma and that really made what could have been terrifying experiences a little less so.

But as I said I didnt think much about inhalers in schools until I returned to my old school and saw this…

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I was amazed that they had an asthma station. I remember the support I had a school but never though of St L’s to be forward thinking and have something like this. In my day my school jacket was a cloak with house colours in the hood (all very Harry Potter- but it was the warmest thing around) so we were really not with the times until I was in my last year and we got sports jackets- this was ground breaking for us!!

I recently emailed school and had a lovely email back from the school nurse who was not there when I was at school but she was the one who implemented the station and put a policy in place as well as getting a list of pupils whose parents consented to them being given the emergency inhaler by a member of staff. The initiative to implement this is great. I really hope more schools can get emergency asthma stations put in place as it could make a real difference to pupils with asthma.

More schools need to follow suit but I understand how hard it can be to put something like this in place and maintain. If we could develop a blue print which could be rolled out across schools so they would not need to establish their own way of implementing and maintaining might mean more schools sign up to become asthma friendly rather than rely on pupils who will not always remember to bring their inhaler to school with them.

I hope the work done by the nurse at St L’s keeps going and others can to be as forwarding thinking and get an emergency asthma station!

Pharmaceutically Enhanced!

I read an article recently which challenged my thoughts on modern medicine and how I have become totally reliant on pharmaceutical products. I am so thankful for all the developments in medicine and where medication is now.

Everyday I take a concoction of medication and far too many for someone in their late twenties almost 30. I take a range of bronchodilators, inhaled corticosteroids, anti leukotriene receptors, oral steroids, antihistamines, xanthines, proton pump inhibitors, anti emetics, bone protection, painkillers, muscle relaxants, antidepressants and hormones. These all range from inhalers, nebulisers, nasal sprays, tablets, injections. This is just on a regular basis but add in emergency treatment of IM and IVs as well. I wonder what has happened to me since it was just 2 inhalers- a preventer and reliever. I never even knew about all these there medications and it has only been recently I have really understood what they all do, how they help me and what benefits I get from them.

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I am constantly working with my team to work out ways of reducing the numbers of medications and that I am only taking what I need to take and what actually does something. There are times when I just wonder why I take everything everyday when I can sometimes find I get no benefit at all, but on the good days I can really see how they help. I can go from gasping for breath to be able to breathe freely with the help of my medication regime and all the different things.

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As great as this all is I can’t help but think where would I be if we did not have these great advances in medication. If we were all still relying on asthma cigarettes, powders or the later developed atomiser and then pocket atomiser- something about the size of a portable nebuliser rather than a pocket inhaler. Im not sure I or many others would be able to do half of what I do without the medications we now have. Im pretty sure I would be in quite a bad way and stuck indoors all the time. It is a thought that doesn’t bare thinking about.

So many of us, myself included complain constantly about the amount of medication they take and the side effects. My list of medication is half medication for my asthma and half to treat the side effects of the medication I take for my asthma mainly the prednisilone. Reflecting now as much as I hate my medication I am hugely indebted to the researchers and pharmacy companies who develop these new medications for all different diseases. Selfishly I want them to focus on developing medication to help conditions like asthma which don’t get the funding as I desperately want to have the life I used to even though I am ever so grateful for the life I have now it would just be great to turn back time to the good old days!

I guess the article I read just highlighted to me how fortunate I am and we are that we are here in the modern world compared to time before.

For now just need to keep on….

Shaking, Rattling and Rolling!!!

Dreams are perhaps coming true!

For the longest time I have been willing for the day when I really feel like I am starting to get better and have my life back. I guess just going back to the “normal” me.

I always thought they day would come when a cure for asthma was found or my consultant tried a different medication and it worked wonders reducing my asthma symptoms and allowing me to play sport and do all I wanted to do again.

But things never happen as you think they will do they???

Over the past few months I have noticed a difference. A difference I couldn’t put my finger on but something had changed. My breathing seemed more controlled, I didnt feel I was always using my inhaler and I felt less tired even though I still am not sleeping well my body doesn’t feel so fatigued. I have been feeling this way a while but because of how the last years have gone I didnt want to jinks myself incase it was just false hope.

I have been willing my asthma to stay stable and been working so hard to maintain control so many ties over the years but had started to think that the day would never come. I really do think the day is perhaps coming where I am turning the corner and getting better. It is a surreal experience but one I am not taking for granted. Part of me has a fear that this is not going to last and I am jumping the gun so I am not celebrating too much just yet and not pushing myself to do all the things I want to!

It has been a long time coming. Just about 14 years since things started going a little off track, but 11 years since they really took a turn for the worse. There is a theory with asthma about the 7 year cycle. After 7 years it never really got much better but it is 14 years now so I am wondering about a 14 year cycle instead!!!

Im not complaining that things have got better but in some way it feel like an anticlimax. Sounds very odd for me to say but after all the medication, all the hospital admissions I was expecting some miraculous medication to fix things rather than it just to get better on its own. Don’t get me wrong I am over the moon that I have got a lot more control now!

The one thing that I think has made a big difference is the multidisciplinary approach to my care. My consultant has been really good at working with me and reducing my prednisilone something I never thought we would actually achieve but we have. Seeing a psychologist is also really helpful with working through the asthma and its impact on life.

I would love to think that this is it. That my asthma is now on the up and will only go up but I need to be real. It is not as bad as it was but to think I will never end up in hospital again is unrealistic. It would be great but if I was to think I won’t need to go again and I do need the hospital it would be a massive blow, so acknowledging that I might need to go is just keeping it real.

So what has changed??

I don’t know. I am on the same medication, Im doing the same things, Im still following my diet so I cannot pin point any one thing that has made a difference. A combination of looking after myself better, a really good regime with my medication and never missing a dose have probably played a big part in it. I have also mentally changed my outlook to look at the positives rather than focus on what I cannot do but rather what I can do and what I have achieved.

I have decided that once I have a prolonged period of stability for the next month or so then I will really start to increase my exercise and get back some of my fitness again as I am really missing it.

I have no idea if this is it or if this is just a short burst of good health but I a going to grab it with both hands and make the most out of it (within reason I don’t want to push the boundary and trigger an attack!).

What I take and what it all does!

Part of having Brittle Asthma means quite a strict daily medication regime but also the constant quest for the magic inhaler, pill or nebuliser which might just be life changing or not even life changing but give you that bit more freedom and better quality of life.

A common theme between brittle asthmatics when first meeting someone is to ask about what medications they take. Not to be nosy but for that inhaler they take that you might not have tried or something different which might help!!! I have a page where it has my medication but I thought I would do a post about the regime I follow and why I do this and what the point of each medication is.

During a normal day I have four medication sessions so to speak: breakfast, noon, dinner and before bed! As I take several medications more than once a day I am going to explain each medication after my regime.

Breakfast: Salbutamol and Atrovent Nebuliser and a saline nebuliser if needed. Seretide and Flixotide inhaler, Nasonex nasal spray, Prednisilone, Theophylline, Fexofenadine, Citirizine, Calci Chew D3, Lanzoprazole, Cyclizine, Nefopam, Co-Codamol, Laxido,

Noon: Salbutamol and Atrovent Nebuliser (if needed. I don’t always feel the need to take this set of nebulisers), cyclizine, nefopam and co-codamol.

Dinner: Salbutamol and Atrovent Nebuliser, Cyclizine, Co-Codamol, Lanzoprazole and Calci Chew D3

Before Bed: Salbutamol and Atrovent Nebuliser along with saline if needed, Seretide and Flixotide Inhaler, Nasonex nasal spray, Theophylline, Chlorophenamine, Co-Codamol, Nefopam, Amitriptyline and Montelukast

When my asthma is a bit better I substitute the atrovent nebulisers with a once a day inhaler tiotropium and my salbutamol nebulisers with salbutamol inhaler however I rarely don’t take salbutamol nebulisers except during the day when at work.

The nebulisers I take:

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I take Ventolin aka salbutamol in either 2.5mg or 5mg doses. Salbutamol is a short acting bronchodilator which helps to relax the smooth muscles in the airways which have constricted causing wheezing and the feeling of breathlessness. I also take Atrovent aka ipatropium in a 500mcg dose if I am not taking my tiotropium inhaler aka Spiriva. Both Atrovent and Spiriva are drugs commonly used in COPD but are becoming more common in the treatment of difficult asthma. It is an anticholinergeric drugs which blocks the muscarinic acetylcholine receptors in the smooth muscles and stops the bronchi from contracting due to inflammation.

I have two nebuliser devices depending on where I am. I have a mains powered nebuliser called a Pari Turbo Boy which is fantastic but not possible to use when out and about so I use a Beurer IH50 portable nebuliser which runs of batteries and much handier than needing to find a plug for the Pari!

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As well as the nebulisers I also take 2 different inhalers regularly and then a ventolin inhaler as and when I need it. The main 2 inhalers are known as preventers. The first is Seretide 500 2 puffs twice a day increased to 2 puffs 4 times a day when unwell, which is a combination inhaler made up of fluticasone and salmeterol. The fluticasone is an inhaled cortico steroid which dampens down the inflammation in the lining of the airways in the lungs. The inhaler works locally on the lungs and very little of the steroid component is actually absorbed in the circulating system. The salmeterol is a long acting bronchodilator which has a 12 hour working duration compared with the 4-6 hours of the salbutamol inhaler. I also take Flixotide 500 2 puffs twice a day can be increased to four times a day, aka fluticasone which is part of the Seretide inhaler. Due to the doses of inhaled steroid I need I was taking a higher dose of Seretide however was suffering with a lot of cramp due to the higher dose of the salmeterol so I have a second inhaler with only flixotide.

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Twice a day I use a nasal spray due to allergic rhinitis associated with my asthma. The nasal spray is Nasonex aka Mometasone which much like the inhaler is a steroid based medication which acts locally on the inflammation in my nose and sinuses.

Along with my nebulisers, inhalers and nasal sprays I also take numerous tablets.

The most important one is Prednisilone. This is a steroid tablet which again dampens down the inflammation in my lungs. The dose I take varies depending on how well my asthma is controlled. If I have an acute episode I will be given 40mg and then reduce as I see fit normally by 5mg every week down to my maintenance dose of 14mg. This drug is one I love to hate. It is really good for when my asthma is really bad but it does with some awful side effects which I need other medications to control. These are and anti emetic Cyclizine 25mg three times a day, a proton pump inhibitor which protects my stomach from too much acid called Lanzoprazole which I take 30mg twice a day, I also take Calci Chew D3 Forte twice a day which helps t protect my bones as one of the side effects from prednisilone is bone thinning. The D3 Forte part increases the vitamin D level in my blood which many asthmatics can lack. Prednisilone also gives me very bad restless legs which I take Amitriptyline 20mg at night as my restless legs are worse at night.

Other tablets specifically for my asthma are Theophylline (Uniphyllin) which is a slightly old style drug which requires close monitoring as you need to adjust the dose to get a therapuetic dose. Too much can make you toxic and very unwell and subtherapuetic will result in less asthma control. I take 300mg twice a day as it is a modified release tablet and taken every 12hours to maintain your blood serum level. It is difficult to explain how it works. It also has some adverse side effects which I take the above tablets for. Another one is Montelukast (Singulair) which is leukotriene receptor antagonist. It works by blocking a substance called leukotriene, which helps to decrease certain asthma and allergy symptoms.

A big part of my asthma is allergies associated with it and hay fever. I take three different anti histamines. Fexofenadine (Telfast) 180mg once a day in the morning, Citirizine 10mg once a day and at night I take Chlorophenamine 4mg. I take this at night as it has a bit of a sedating effect which is not good during the day.

I also take painkillers everyday at the lowest dose possible although this has to get increased when I am struggling with my chest. I get a lot of pain in my lower left lung where I have had repeated infections and have a lot of muscular pain as well as previous cracked ribs. For this pain I take Nefopam 30mg three times a day. This can be increased up to 90mg three times a day but I don’t want to take a high dose. I also take CoCodamol. During the day I take Co-Codamol 8/500 x2 three ties a day as it can make me feel a bit dopey but at night I take 30/500 x2 at night. I need to take Macragol (Laxido) sachet either once or twice a day as co-codamol can cause you to become constipated.

Its quite a lot of medication. I m really lucky that i have a fantastic pharmacist who has set up a dosette box for me so I don’t need to have boxes and boxes of pills. I just collect a tray once a week from my chemist and it has all my pills in it ready for me!

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Every three months I have a Depo Provera Injections which maintains my hormones at a constant level as we worked out my periods made my asthma worse so by keeping hormones at a constant level this helped.

I regularly require antibiotics such as Amoxicillin or Doxycycline for chest infections and if presenting with an acute attack am given IV Magnesium, IV Hydrocortisone and IV Aminophylline or Salbutamol.

Just now I am at the end of my tether with my health and have asked my consultant in a desperate plea to see if I could try Methotrexate as a steroid sparing agent. I don’t care about the side effects I just want some life back. This medication is known as a steroid sparing drug which can help people come off prednisilone. I need to wait and see if she thinks this is a good idea or not. I need to do something as I can’t stay as I am.

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.

When the drugs all get to much and mistakes happen.

This is what I started to struggle with. I found I was making errors taking my tablets. I would take extra of some and not enough of others or vice versa. This caused me to get very ill when I became toxic as I was out with the therapeutic level for one of my drugs.

Living with a chronic condition which is so unpredictable is so difficult. You never know whats going to happen when. You need to think about everything you do and the consequences of it. You day is often dictated for you and you need to fit your life in somewhere.

With chronic illness medication plays a massive part. As the condition develops you just end up on more and more medication. Often to counter act the side effects of medication rather then the condition itself.

Working as a nurse I deal with medication a lot. I know a fair bit about different drugs and what they do. I can sort out tablets and everything for my patients not a problem.

But when it comes to myself I have recently been finding it so hard. Wether it is because I don’t feel well and trying to concentrate while I make sure I have taken the correct thing at the correct time and not forgotten I have taken it and not take it at all or forget and take extra. I would spend a saturday mornings sitting trying to sort through my box of pills, inhalers, liquids and nebs and sort them into a box for 2 weeks. It is not a hard job to do but I just broken down. I couldn’t cope with my medications any more I didnt want to take them, I got confused with when I was taking what. I knew I couldn’t afford to not take medication and could afford to make errors.

Feeling almost ashamed I called my GP and spoke to her about my problem. She was super and arranged a dossette box for my pills which the pharmacist will make up each week for me. My pharmacist who I know well phoned to chat to me about it but was really busy and wanted to see if I could wait till february before he did it but he would give me a weeks medication in boxes instead. I almost broke down. I was on the edge of tears. I think because it was all becoming real that I have really been struggling to cope with how much I am having to take. I said it was fine and I would just go back to getting my scripts 2 monthly but that would mean phoning my GP up and getting another script sent out.

For me I think I had rationalised out in my head that by having my prescription done weekly and someone else was putting my pills in separate bits for me then I would not be as aware of how much medication I am actually taking. I can swallow about 15-18 pills at once with  no bother so in my head having them in all in a box with no input from myself then I just have to pop one pack and chuck them down compared with before having to pop what felt like hundreds of pills out their packets each morning (twice in the morning so I could put y lunch ones in a box for work) and night. By the pharmacist giving me a weeks supply in boxes I felt I was still bogged down by loads of medication and almost just need a break from it. A break which I can’t have as can’t go without taking it!

Having the box has made a big difference. I was getting so confused by what I was taking and how much I was taking and when. Even when I had a list I would get lost and forget what I have or have not taken. This was not so bad when I was feeling well but on days when I have had little sleep or am feeling pretty bad it was such a mammoth task. meds

This picture I posted to instagram shows what i used to have in the top two photos. I would need to use 2 7 day pill organisers to fit everything in for a week and had a huge box of all my meds. It would come in shopping bags. Thank goodness I don’t have to pay for those bags!!! But now the bottom 2 photos I get my inhalers in one bag and nebs in another and my pills in the dosette.

It has only been a week but so far I have already noticed a difference even if it is just to make life easier and psychological so I don’t think I am taking so much I don’t care. I helps.  It also means I don’t feel like I am living in a pharmacy. Other than nebs and inhalers lying around to reach when needed I don’t need to see piles of pill boxes anymore.

I am really thankful to my GP and pharmacist for sorting this out for me.

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?