Tag Archives: inhalers

Do you know what inhaler you are on?

I have just been reading a blog post on Asth.ma [a blog by an Asthma Researcher at Harvard] about how a lot of people don’t know the names or doses of their inhalers whereas they often know the names of the other medications that they take e.g. Enbrel, or Methotrexate. And it has really got me thinking about 3 conversations I have had in the past couple of weeks.

A few days after I had moved up to uni I found out that one of my flatmates has asthma, and being naturally inquisitive I asked her if she was on any sort of preventer inhalers, to which she replied that she was on the purple one… I knew she meant Seretide/Advair and I didn’t really think that much of it because so many people know their inhalers by colour rather than by their actual name that I wasn’t that concerned. I wasn’t even that concerned when I found out that she didn’t even know the dose of her inhaler, but I could see just by looking at it that she was on the 125/25 Seretide inhaler. The next week I had 2 similar conversations with two other people from uni, both of which had asthma severe enough to be on an inhaler corticosteroid combined with a LABA [Long acting beta antagonist]. One girl identified her inhaler as being red and white – meaning that she took Symbicort, but she didn’t know if she was on the 100/6, 200/6 or 400/12 dose, and the other said that her preventer inhaler began with an “R”… We later identified her inhaler as the new Relvar Ellipta inhaler using google.

At the time I didn’t think that much of it, but if either one of these 3 people has any sort of emergency or ends up in a situation where they need to identify their inhalers they are going to have a really tough time. 2 of them didn’t even understand why they were moved off of Clenil [AKA the brown inhaler] and onto an inhaler containing both an corticosteroid and LABA… They both said that their doctors/asthma nurses had said they need to take something stronger but hadn’t gone into any detail about what the “something stronger” was. Am I the only one who finds this remotely worrying? Absolutely not, and the point was well highlighted by Dr. Wu.

Personally, in addition to my Ventolin, I almost always carry my asthma medication card in my wallet/purse [anyone can order a card from the Asthma UK website, here] which, gives details on all of my asthma medications. This including the name of my medications, the dosage, how much I take, when I take it and there is also a column for extra information… For example, since I have been prescribed both the 125/5 and 50/5 doses of Flutiform, I have written that I would take the 125/5 if I am yellow zoning, and I have written these zones in too. This means that although I know what medication I take, by name, if I was ever in a situation that meant that I could not talk then health care professionals do not need to mess about trying to find what medications I am on. This also helps when I see my GP or asthma nurse because we are able to discuss medications in full rather than getting confused with all the different colours…

[Note: I do admit to using the colours to identify inhalers in some situations but this is purely to help people understand which inhalers I am talking about, and I would not do this unless I thought necessary to aid understanding]

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A busy few weeks

My life has been pretty hectic recently. I found out I was going to go to university about a week ago (on the 14th) which I really wasn’t expecting based on how I thought my exams had gone, so I hadn’t bought anything that I needed. For any of you who have moved away to go to Uni, you’ll have some idea of what it is like to find out that you have to get 6 freaking pages of stuff [i.e student essentials] in 4 weeks… and for those of you who don’t it’s super stressful, exciting, nerve-wracking and really expensive! This week I have had to pay out over £500 for necessary things including the deposit on my accommodation, the gym, Uni essentials including pots and pans, bedding, towels and bathroom stuff, and my Gym membership. It’s been crazy expensive week, but thankfully I think I have got almost everything I need to move out, so the next few weeks shouldn’t be that expensive. I have a new found respect for anyone who has ever had to move out and get new stuff because it is far more difficult than I expected!

I am also happy to report that I am back on track with my asthma meds… I took an impromptu break from Flutiform and relied solely on Ventolin for a few weeks which was a stupid thing to do and was a result of the massive amounts of stress I was under from certain events going on in my personal life… I have now either resolved or come to terms with these issues and I am feeling a lot happier. However, my lungs are still hating on me for leaving them without a controller med for a while and so I have had to up my dose of Flutiform back to the 125/5 inhaler but I shouldn’t complain because it was my fault. I am hoping that in a few weeks everything will settle back down to normal, but if not I shall just phone my nurse and ask her to change my repeat prescription back to the 125/5. And that has also reminded me that I need to book in for my flu jab! GET YOUR FLU JAB GUYS! There is no point getting ill if there were steps that you could have taken to reduce the risk.

Now onto the hip… I think I mentioned that my bursitis has come back in my hip, or maybe I didn’t. I am incredibly tired right now because I haven’t slept well in about 2 weeks because of my bursitis and it is affecting my memory so I can’t actually remember if I have told you about my hip. So in short, my bursitis came back about 2 weeks ago after no problems since the end of June when I had a burst of pred. There was a few low points last week where I was feeling really sick because of the pain but thankfully I wasn’t actually sick. I am now considering my options for treating the bursitis again and as far as I can tell I have 5 options:

  1. Continue treating with 1000mg of Naproxen a day, and 1000mg of Paracetamol PRN/every 4 hours, and Ice
  2. See my GP and ask about a burst of pred or a cortisone injection
  3. See a private physiotherapist
  4. Phone my Rheumy
  5. Do a combination

So Option 1 is what I have been doing for the last 2 weeks and although it’s preferable to doing nothing, I am still having a lot of pain and my hip is still warm to touch (except from right after I have iced). As for Option 2, I am feeling particularly self conscious about the way I look right now so pred is definitely out of the question but I might be up for a cortisone injection into the bursa if the GP can guarantee that it will at least help a bit. Option 3 is out of the question, but it was something that my Mum brought up in the middle of the night when I was still wide awake and intercepted her on the landing when she was going to get a drink of water… I have looked at the prices of the private physiotherapists around here and they are all far too expensive, and there is no guarantee that it will help. You may be wondering why I didn’t think about NHS physios, and whilst every physio I have had has been awesome, the waiting time is really long and I just don’t have the time, or the patience, to wait. Option 4 was another idea that my Mum had, again in the middle of the night, but since I have an appointment on the 17th of November [the appointment letter came this week, along with a letter saying that I DO NOT HAVE LUPUS] I might just try and wait it out. The Rheumy also said to phone her if I was flaring but this technically isn’t a flare… or at least, I don’t class it as a flare. Option 5 seems like the best option, there is no way I am going to let my GP take me off Naproxen since it’s the first time in years that my joints have felt relatively good, with the exception of my hip, but I don’t feel like I can carry on with just Naproxen and Paracetamol, as much as I hate to admit it, so I guess I might see about the cortisone injection… Especially because I have read that a cortisone injection could “permanently resolve” the bursitis, which after 2 years would be excellent!

I have been planning/thinking about some more posts that I could do and I may have also found another person to write us a guest post, which I am very excited about… and I also need to ask Justin of Haika Clothing to do another interview with me to tell us about the progress he has made [I am currently saving up to buy some more of his awesome shirts, and $5 of every purchase goes to an asthma charity!]. For more frequent updates check out my Facebook page.

Guest post: Asthma is more than a blue inhaler… by Becky

[editors note: this is Becky’s story. Asthma has severely affected all aspects of Becky’s life, this is why asthma is not just a blue inhaler]

Imagine this your 20 years of age at university training for your dream job when one day your throat starts to close, skin feels on fire and feels like you’ve just been hit by a bus. You can feel your airway closing and all can manage is a whisper of help. This was me nearly 5 years ago whist at university I suffered a severe form of allergic reaction called anaphylaxis. I was taken to hospital and treated. After this I was given an epi-pen [editors note: this is an injectable medication used to reverse anaphylaxis]

Before this event I was fit and healthy I didn’t take any medication, I could run and do anything I want. I had plans to travel once university finished to work across the world. But only allergic reaction wouldn’t ruin everything, well it wasn’t just once. In one week I had 4 similar attacks. Eventually I saw an immunologist and started on some antihistamines and given a ventolin inhaler. However after a few months of in and out of hospitals and struggling to continue my degree my attacks had changed I no longer had a rash and obviously swelling but since it felt the same it was treated the same but one doctor started giving my asthma medication and I was diagnosed with asthma. I was very quickly sent to see an asthma specialist who confirmed the diagnosis.
I was still spending nights in hospital and going to lectures with no sleep, my work was suffering and I was falling asleep in lectures. My mental health was affected as I was frustrated about my situation, I had little understanding in why it kept happening as drugs were added and failed to make a difference, I was no longer able to go in and out I was staying in and something had to give and it was university. I was invited to a meeting with the head of course and my personal tutor and despite occupation health giving me all clear to do day shifts (my attacks mainly came at night) the felt I was a risk to myself and my patients. Without placement I couldn’t complete my course and had to leave.

I was finding it hard to get out as so many things seemed to trigger an attack my friends were getting fed up with having to fight with me to go to hospital as I was in denial, one by one they started to ignore me. I wasn’t allowed to take part in university societies anymore so lost another set of friends and being on steroids allot of the time I started to put on weight, my mobility was affected and got out of breath so easily so I just stayed in allot of the time.

After my contract run out on my halls I couldn’t afford to live by myself anymore, so I moved home to my parents, I was having an attack about once a month. It was as shock to them at first how sick I got as when I was ill at uni I never phoned them even when on a ventilator. I didn’t want them to worry. I started to work but I managed 4 months before my sickness rate become an issue I left for a less stressful job, I worked one day a week, slowly the jobs I could do became less and less. People became scared to work with me in case I died on them I was taken from work to hospital many times and my contract was ended. I am not cross for being fired but they had made adjustments to the hours I worked, what I did and did most things to make sure I was safe.
After losing the 2nd job I decided to give work a miss since then. I didn’t know what I wanted to do with my life; I couldn’t see who would want to employ a person who took a week a month of sick. My admissions were getting longer by this point as I required different drugs and was spending more time in ICU. I had lost my friends, my job and my independence not to mention my sanity. There was no chance of me going back to uni.

Roll on the present day. Not allot has changed I am still going into hospital every month for around 5 days each time. Luckily I have a plan on what drugs to give me when I come in to try and avoid the need for ICU and ventilation. I still have no idea what the future holds or what or if I will do for a career. I’ve tired almost every asthma medication going. I’m on 3 different inhalers, daily nebulisers and a cocktail on medication and need allot of medication to counteract the side effects of them, mainly steroids. Steroids can cause bones to become weak, diabetes, high blood pressure and insomnia. Not a night goes without waking up wheezy; I’m consistently tired as a result. Its likely I will never be drug or hospital free.

I volunteer when I can, working with children but after an hour I am exhausted. I live by myself now but my mum comes and does allot of my housework for me and does my shopping when I can’t go out. I am also studying an Open University degree, this seems to work for me as I can work around how I feel. I can’t walk that far without getting tired and short of breath and sometimes need a stick as steroids cause muscle weakness.

Its not all doom and gloom though, asthma has taught me about myself and my personality, I’ve learned who my true friends are and the value of enjoying life. I’ve got closure with my family and meant some friends though a joint understanding of asthma

Asthma isn’t just a blue inhaler. I am disabled as a result and changed my life.

[Editors note: I’d like to thank Becky for this guest post, it highlights how serious asthma is and that it is not just a blue inhaler but a life threatening condition. I hope that everyone understands how much asthma can impact on a person’s life]

A review of 2012

2012 has been quite an eventful year for me, I think the most relevant to this blog was that it was made on the 21st of October. Now if I just reviewed 2012 from October to December I would miss out 9 months if the year so even though I haven’t been blogging since January, I am going to review the year from then 🙂

So in January 2012 nothing much happened. I did have an appointment with the Rheumatologist which resulted in me getting a full body bone scan done. The results from the scan were inconclusive, something to do with the scan being harder to interpret when a person is still growing. However my blood work still showed the antibodies that are associated with Juvenile Arthritis (which I will blog about in the new year). I was also tested for lupus (which I shall also write about in 2013) but thankfully that test came back negative.

February was remarkably uneventful, nothing particularly important happened. I did go skiing with my family which was fab and my then-undiagnosed asthma didn’t even bother me which was even better.

In March I started going to physio again mainly for my shoulder which would dislocate if I picked up anything heavier than a bag of sugar (not fun and very painful) in fact my shoulder had become so weak I was told that I didn’t really have any muscles on my back holding my shoulder in because the muscles had stretched so much with my shoulder dislocating and subluxing all the time. My shoulder had been bad for about 3 years and I had failed all other rounds of physio that I had had before. But I am glad to say my shoulder hasn’t dislocated or partially dislocated since July. One good thing that came out of all these dislocations is that I am an expert in relocating my shoulder 🙂

April was another pretty boring month along with May nothing much happened except my asthma was starting to bother me more and more. And what was even worse was that I didn’t have an inhaler to use so I had to just wait out my attacks, but they weren’t very severe as I could still talk throughout.

June was a pretty eventful month. I had got sick of the asthma so I made an appointment at my local GP surgery. I got an appointment and the doctor pretty much dismissed me she didn’t give me an inhaler but she did send me for pulmonary function tests with the asthma nurse but that wouldn’t be till July. In June I also celebrated my 16th birthday and finished secondary school which was quite a big deal.

So in July I finally got my pulmonary function test which came back all clear, but the asthma nurse was a bit concerned with the wheezing and chest tightness I had been experiencing and so sent me off with ventolin and a peak flow with instructions to take my peak flow morning and night, before and after exercise and pre and post ventolin. I went back to see her two weeks after my first appointment and she was really shocked at how bad my peak flow was during and after exercise. And so I was diagnosed with exercise induced asthma. I was also given a brown inhaler (clenil modulite 100) to help prevent attacks.

In August my asthma was still uncontrolled and so I was given serevent, a long acting bronchodilator to try and prevent attacks. In August it also started to get cold and my joints really started to be an issue, it was taking 2 hours for my morning stiffness to go as opposed to the 1 hour it had taken in previous months, and my hip flared so much that I could hardly walk. I was on the verge of going to the doctors and asking for some pred (an oral steroid) I was so bad. Eventually the flare calmed down on its own but my joints haven’t been the same since unfortunately. August was also the month that I got my GCSE results in, all passes WOOP! And I finally finished physio on my shoulder.

In September I got a chest infection and went to the doctors again but the doctor I saw was completely incompetent and couldn’t hear anything in my chest even though there was an audible wheeze that even my mum commented on (she still doesn’t believe I have asthma) and so I was given nothing not even a short course of antibiotics. In September I also started sixth form college to study biology, chemistry, psychology and German.

In October I got another chest infection and yet again I went back to the doctor who I had seen before but this time I took my mum with me and yet again the doctor said there was nothing wrong with my chest and then he got confused between the pain caused by a chest infection and a heart attack so I was sent for an ECG which of course showed that I had not had a heart attack.

In November I went back to my asthma nurse and we decided that the serevent was not helping my asthma and I was switched onto seretide which also includes serevent. So I am now taking a combination inhaler of which only one component works. So I was not too impressed but I decided to give it a go. My asthma was also upgraded from mild intermittent (exercise induced) to mild persistent and now finally to moderate persistent asthma.

Now in December my asthma has not improved, I haven’t been in the green zone since late September early October, my peak flow stays around 65-70% but I did manage to get up to 75% a few weeks back. My joints have also been flaring a lot this month my neck and ankle in particular. I had an appointment with my rheumy a few weeks back who was shocked that my morning stiffness now lasts at least 3 hours and in my neck and ankle’s case pretty much all day. So I’m being sent off for more scans and hopefully for some more physio.

And that was pretty much all that really happened in 2012. Im curious to think about what 2013 will bring.

The freezing fog, stiff lungs and stiff joints

Where I live there has been a freezing fog all day, temperatures havent got above -3 all day!

I said in an earlier post about my triggers that I wasn’t sure if my asthma was set off by the cold weather since I can go skiing with absolutely no problems what so all but today within literally seconds of going outside I was coughing up a lung which wasn’t too pleasant. So yeah many puffs of ventolin later the lungs still arent feeling too good, they are still very tight and I can definitely hear a wheeze throughout my exhale, my peak flow is down to about 63% from the 70ish% it has been hovering at since about October :/ I never really realised how much of a difference 7% could make but today I can really feel it. I guess my only option is to keep going with the ventolin.

The cold has really got to my joints as well. Despite my pretty lame efforts to keep my fingers going they all pretty much seized up by the middle of first lesson which was bad because I had biology which involves a lot of writing. To be honest I did ignore the warning signs of this flare. When I am about to flare my elbows get sore (strange isnt it) and for the past week or so guess what’s been sore? Yes your right! My elbows. So now I have to add an extra 30 minutes to my morning regime, an extra 10 minutes to get out of bed, and extra 10 minutes in my boiling hot shower and an extra 10 minutes to soak my hands in a basin of hot water, oh and of course dose up on ibuprofen and paracetamol (even though I have been prescribed. Indometacin for pain/swelling relief which my GP has yet to sort out, ive been waiting since February)

I get the bus to college which takes 35 minutes, but it’s good because even though the windows leak so the seats are frozen solid with ice and even though there is no heating I get a seat which does help a lot with my back and neck pain, but since the knees are flaring, after 35 minutes they dont want to straight anymore which is a real pain in the bum when you have to climb down some steps to get off the bus. Anyway I think I’m going to soak my knees tomorrow for an extra 5 minutes on top of everything else and see how I get on. Hopefully this is only a mini-flare and it won’t last too long.

An okay rheumy appointment

So I had my rheumy appointment earlier today. I took the day off college so I could go. She didnt really say anything helpful to be honest just that in my last blood draw I still had all my antibodies that indicate juvenile arthritis including a positive rheumatoid factor (but that was back in January) so we took bloods again.

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Thats my little battle scar, where the needle got me 🙂 If anyone ever asks about does getting blood taken hurt my usual response is “I think getting anything poked through you skin into you body hurts” but what I dont usually tell them that the pain a blood test causes is insignificant compared to the joint pain I have on a daily basis.

Anyway me and mum asked about my neck pain too, so the rheumy looked at it and made me do a few movement tests which showed her how limited my motion was. She didnt really say what was wrong with it but she is referring me to a physio and I need another scan (either MRI or bone scan) :/ Because the rheumy didnt give any helpful tips on how to control the pain mum went out and bought me this.

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Ive been wearing it all day and it’s really comfortable and warm so fingers crossed it will help my neck.

I asked the rheumy if she had any idea of what I have and her answer was “you have some signs of inflammatory arthritis but your bone scans show that you are still growing so it is hard to interpret it” I thought that this answer was very helpful, NOT! So we are basically watching and waiting. Ive waited four years now and I really would like an answer but I know now that I dont have Lupus so that is good.

Anyway because I took the day off college I decided to go and get my prescription of seretide which has been waiting at the GP surgery for a week now. And here she is:

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This little beauty is keeping the inflammation down in my lungs but to be honest she isnt doing very well and I’m really wanting to switch onto symbicort. Originally my asthma nurse wanted to put me on seretide 125 but that only comes as an aerosol and my hand joints hate aerosols so I was put on seretide 100 instead. To be honest I dont know if that extra 50mg of steroid would have helped me but nevermind, there isnt anything I can do about it.

Living in the yellow zone

So I have been in my yellow zone of my asthma action plan since October :/ that isnt a good sign. So even with my LABA and steroids my lungs arent really doing as well as they should be.

I got my first (and only) spirometry in June and my peak flow was 104% of predicted and everything else was ranging from 98% to 101% of predicted (to be honest at the time I didnt really know a lot about spiros so I didnt pay too much attention to anything other than the Peak expiry flow. At the moment I would say average peak flow for the last few months has been about 75% optimistically and about 70% pessimistically. I know some of you out there would think that breathing at 70ish percent of predicted would be amazing but for me it feels absolutely rubbish. But since I started the seretide about two weeks and a bit ago I have made it to 80% twice which I was quite grateful about.

So for any of you who dont have asthma or havent lived for extended periods of time in the yellow zone it’s horrible. I get short of breath when walking up one flight of stairs and I need to take lots of breaks in between floors. I can’t talk as well as I want to because I just can’t catch my breath (although this may have something to do with all the colds/infections ive had lately). I am shattered all the time because of the sleepless nights and my voice has gone all husky from doubling my inhaled steroids.

So yeah I am not feeling the best but I sure am not feeling the worst ive felt, yeah peak flows at 49% a few months back and then pretending to everyone that everything is fine even though you cant speak in sentences is not a good place to be and I’m glad I’m a whole lot better than that now.