Category Archives: asthma nurse

Asthma action plans and vaccinations

First of all, I apologise for not finishing RABlog week… My life is super hectic right now with the uni work mounting up and living with a chronic illness so sometimes it’s hard to keep up with the blog too.

Today I had an appointment with my new asthma nurse to see about getting an asthma action plan. I have found that recently my asthma has been a lot more controlled than it has over the past year and I am having virtually no symptoms unless I am sick… which I was the other week when I made this appointment. Stupidly I hadn’t thought about getting an asthma action plan earlier so I pretty much just survived on Ventolin because I wasn’t ill enough to see the GP or asthma nurse.

This new asthma nurse is amazing. She checked my inhaler technique without my asking [it’s always better to know that you are doing something like this correctly, even if you have been doing it numerous times a day for years] and she didn’t put a huge emphasis on peak flow numbers. My new asthma action plan doesn’t even contain any peak flow readings to work off because my nurse would prefer me to treat based on symptoms and not to get too caught up with readings. She did ask me to check my peak flow a couple of times a week though because this can provide an early warning for whether my asthma is getting worse or not. We also discussed my treatment options. She asked me whether I would want to try the lower dose of Seretide even though when I was on the equivalent dose of Flutiform my chest got bad again… I agreed to give it a go because I really don’t like taking inhalers/medication at all, and if there is a chance that my asthma could be controlled with a lower dose then that would be awesome. I have been given a prescription for 3 months of Seretide 50/25 to take, and I still have 3 months worth of Seretide 125/25 so I have been told to switch up and down in accordance to my new plan. And if I find that my asthma does become worse again on the lower dose then my asthma nurse is happy to switch me back up to the higher dose. She explained that some people need the higher dose to stay stable, and it is better to have he best control possible over asthma than to get caught up trying to reduce the dose when you can’t.

I also got given the flu jab and the pneumonia vaccination… one shot in each arm. Surprisingly the flu jab hurt a lot more even though the pneumonia vaccination needle was larger. I can’t remember if I wrote about my experience with the flu jab last year but I ended up with an incredibly itchy and hot red circle around the injection site last year, which popped up a couple of days after the jab. I have the same red circle at both injection sites this year but the rash came up within an hour of getting the jab. Thankfully it isn’t too itchy right now but I am keeping a close eye on them. I presume it is just going to stay as a local site reaction because I haven’t got any other symptoms apart from being slightly achy which is awesome!

A late night update

It’s quite late here so I am only going to write a quick update… At this rate I am only going to get 5 hours of sleep.

So the other week I had my review with my asthma nurse to see whether Singulair has worked for me… It had not, and in my opinion it was a waste of money. The only effect it had was to give me wacky dreams and to keep me awake, and was generally something that I didn’t feel comfortable taking anymore. My peak flow was in the green zone and I felt well controlled, but yet exercise was still an issue. My asthma nurse decided to grab another nurse in to help with the consultation and her advice was to see the chest consultants up at the hospital. I was not too keen on this idea though. I’m not going to go into details but unless you know me well, you probably wouldn’t know that I have quite a lot of stuff going on in my personal life right now and I do not need another consultant, that I don’t feel I need, complicating that right now. I managed to convince the two nurses to let me have a trial of Seretide again. For those of you who are new to my blog, I tried Seretide as a DPI for about 2 months back in 2012/2013 and found that it actually exacerbated my asthma, so this time we have decided to try the MDI [aerosol version] of Seretide and see what happens. The problem with Seretide is that you don’t get the dosage flexibility that you do with combination inhalers containing formoterol as the LABA component [AKA Symbicort, Flutiform, etc]. I used to take Flutiform 125/5 2 puffs twice a day on a normal day and 3-4 puffs on a day that my asthma was bad or on days I was exercising. However, I was prescribed Seretide 125/25 2 puffs twice a day so there is some mismatch in dosage that I was worried would mess with the control that I already had. But my breathing has been really good since starting it (with the exception of one attack which was due to me completely ignoring my triggers on a night out… so basically I caused myself to have an attack, not something I would advise!). I am still worried about what might happen if I get a cold, which is when I would normally increase my dose of Flutiform but right now things are looking up!

I also wanted to update you all on my joints, they have actually been feeling pretty good recently. Not much pain or morning stiffness at all. I am still getting swelling in my ankle, but we are now querying whether that is due to this autoimmune condition or whether it is due to a mechanical problem… I have a MRI in May to try and work out what is causing the pain and swelling there. However, this past week I have seen a massive increase in pain, and stiffness, and fatigue. In fact my joint pain was so bad at one point that I as seriously considering going to A&E… while you are sitting on the floor in your bathroom, trying not to vomit your anti-inflammatories up from the pain, A&E seems really, really inviting. But I got through it, the meds kicked in and I was mobile again surprisingly. I honestly thought that day was going to be a day from hell, completely spent in bed but I actually managed to go out for a run that evening. I spoke to Britt [AKA The Hurt Blogger] about this as I have read about similar experiences she has had, and she has found that exercise can reduce her symptoms, of course without meds exercise wouldn’t really be a viable option but together… they help. And that is what I have found too, the meds [and heat packs, and hot showers, and ice packs] help to get me moving, and once I am moving comfortably enough to do exercise, that helps to reduce my pain and reduce any stiffness that I still have. Don’t get me wrong I am still sore, I do still struggle but exercise helps to make my struggles easier…

I have also been experiencing some newer symptoms… or maybe they aren’t that new and I am only just recognising them as symptoms now. I have been having experiencing hair loss, literally I loose a handful of hair every time I wash my hair. I am so thankful that I have thick hair, I don’t know how I would look otherwise. I am pretty sure it’s not the meds because I don’t really take anything that can cause hair loss, and I have been on all of my meds [except from Seretide] for long enough now to discount that as a symptom. A friend of mine [who deals with autoimmune arthritis, among other autoimmune conditions] has suggested that it could be the inflammation from my condition causing the hair loss, which is a distinct possibility. I have also been getting nose ulcers… for those who don’t know what these are they are essentially the same as mouth ulcers but in your nose, and mine are incredibly painful! I asked a pharmacist about them and she suggested trying vaseline on them to try and soothe them a bit, and it helps to a certain extent. Since the end of February I have had about 5 or 6 and they are definitely not pleasant. These are two symptoms that suggest that my condition is not as controlled as I had thought and will definitely be brought up to my rheumatologist when I see her next… These may also help with narrowing down my actual diagnosis rather than just being labelled with an autoimmune disease.

Asthma and exercise: My current experience

I haven’t really blogged that much about my asthma for a while, mainly because I have been focusing on my joint health a lot. My asthma has been pretty well controlled these past few months, and I have only really experienced symptoms if I am exposed to a trigger. My Ventolin usage has been right down which is excellent, my peak flow has been okay for the most part, and I haven’t really needed to increase the dosage of my Flutiform that much either.

My main issue has been when I exercise. My friend and I have just finished our second week of running using the “Couch to 5K” app which gradually increases the distance, and length of time that you run for over a period of 9 weeks until you can run for 30 minutes [and hopefully run a distance of about 5k] at the end of it. I have never been a fan of running, although a lot of the sports I used to do involved running [football, cricket, netball, ultimate frisbee, rounders, etc]… I just hate how running makes me feel while I am actually doing it, I hate how tight my chest gets, and I hate how it makes me cough, I hate the excessive mucus production I get after every run [that may be a bit TMI]… But having said that, I really like how running makes me feel after I have finished a session [apart from the chest issues part]. The release of endorphins is fab. My main concern is now that the app is slowly increasing the length of time I have to run for… Running intervals of 90 seconds makes me feel like my chest is going to kill me, so how is running intervals of 2 minutes and 3 minutes going to make me feel next week, or running for 5 minutes the week after.

I admit that I am not that fit right now, but being unfit does not make you wheeze, it does not make you cough till your head hurts, it does not make you feel like you have an elephant sitting on your chest. Being unfit makes you more out of breath, more hot, more sweaty… that is the difference between being unfit and having asthma that is triggered by exercise. I explained all this to my asthma nurse on Monday and she decided that we could try Singulair to see if it helps. I have just done my 2nd run since starting it and so far no difference, although I haven’t been taking for Singulair long enough to make a difference so hopefully I will see a difference over the coming weeks. I have also increased my Flutiform to 3 puffs twice a day on days I am exercising and I have also started pre-medicating with 400mcg [4 puffs] of Ventolin before I exercise… Both of these are helping somewhat but I am still really struggling… I have also started taking my peak flow before and after exercise, and even with the added Ventolin and Flutiform my peak flow still decreases by up to 100 points [in my case this is equivalent to 25-26%, although this drop can range from 13% all the way up to 26%, most likely depending on how I was feeling that day, as well as environmental factors]. If the singular doesn’t decrease this drop, or if I am still feeling pretty rubbish during exercise my asthma nurse and me are going to have to put our heads together to work out what is best in terms of treatment.

However, despite my asthma I do feel as if I am getting stronger, I have lost 5kg [11lb] since January, and I have only been exercising properly for the last 2 weeks… Right now I try to swim twice a week, and I run 3 times a week too although because of my asthma, I can’t work out as hard as I would want to, but with the right treatment I’m sure that will change. It is just very frustrating because my joints are at a place where I can exercise and build back the muscle I have lost and I am really motivated to get fit but my lungs are putting the breaks on it a bit… I am so incredibly lucky to have an asthma nurse who understands what it is like to have asthma, and have it preventing you from exercising to your best ability [she has asthma herself, and likes to cycle], and she isn’t one to tell me to stop exercising like my last asthma nurse asked me to do… Actually my last asthma nurse asked me to quit my job [as a swimming teacher and coach] and to stop swimming, but this asthma nurse is happy for me to continue exercising as long as I know when my lungs have had enough, and she is fully on board with trying new treatments so that I can work out as much as I can, within reason of course.

A review of today’s appointments

I have a lot to update you guys on! Today has been hectic!

It started off with a rheumatology appointment at 9.30. I was super nervous about this appointment because I didn’t feel that my joints were as controlled as I would have liked even though my morning stiffness had improved and I am able to exercise now [I am training for a 5K 3 times a week, and I swim twice a week] as my joints still hurt and swell, I still have bilateral achilles tendonitis, both my MCL and LCL in my knees are still playing up and I am absolutely knackered. I was worried that my Rheumy would suggest an immunosuppressant [AKA methotrexate or azathioprine] and I was worried about the implications of this on my course and placement as I will be on an infectious disease ward on placement… but thankfully things have turned out for the better and right now I do not need to go on any sort of immunosuppressive therapies [although I was warned that this could change]. I don’t even need to change medications! I had struggled with fluid in my left knee throughout February but thankfully taking Naproxen twice a day [rather than as needed] every day has sorted that and I am happy to report that my rheumatologist found no inflammation or fluid in any of my joints!!! *Cue the happy dance* I also found out that I don’t have any inflammatory markers or auto-antibodies in my blood! First time in 5 years I haven’t had antibodies in my blood guys! This is big!!!

However, we did find that I have lost a significant amount of movement in my right ankle and I have experiences catching/locking in that ankle so the plan for now is to stay on Naproxen and Plaquenil/Hydroxychloroquine at the same dose [400mg a day] for another 4 months, get an MRI on my ankle to see if it is a mechanical or inflammatory issue, continue with my achilles tendonitis exercises, get bloods done and follow up in 4 months.

The nurse I had today was absolutely brilliant, I only had 5 tubes of blood taken today and the nurse remembered me as the girl who usually gets 8 taken… I feel that I must have a bit of a reputation. We had some great banter together, and swapped some funny patient stories about what we experienced on placement, or in her case, in work. I feel that people like her really make your day. My rheumatology clinic can be really depressing, no one wants to be there and you can feel the dread hanging in the air as you sit there surrounded by [mainly] elderly people, or worried parents of younger children/teenagers, but as soon as this nurse walks into the room it really lifts the atmosphere and lets everyone have a little chuckle… Things like that are important.

Me and mum then had to rush up to my university accommodation [about 50 miles from the hospital] so that she could get back down to go to work… and the road was full of lorry’s so that delayed our progress because a lot of them thought they were powerful enough to overtake each other, when they really weren’t. But I got up here in plenty of time to make my asthma annual review.

This was my 3rd asthma annual review… that’s crazy right? I got diagnosed nearly 3 years ago, it really doesn’t seem that long. This is my first asthma review since I moved to university and it was my first asthma review with my new asthma nurse, in fact it was the first time I have met my new asthma nurse so I was quite nervous. But I shouldn’t have been, the appointment went very well. I explained that I felt that I am well controlled [with the exception of a little episode the other week, as a result of having a drink with ice in it] but my big problem is exercise. I find that exercise sets my asthma off quite a lot and I feel that it is preventing me from getting to my full potential during exercise. So we discussed my treatment options, I am already on a combination inhaler so I am to increase that on days that I exercise [although she didn’t tell me how much to increase it by… I’ll probably take an extra puff on the morning and night], I can also pre-medicate with more Ventolin than I do already… She also phoned the GP in my practice who specialises in asthma who advised that I should have a trial of Singulair [AKA Montelukast], so I have to pick up my prescription tomorrow and try it for a month. And then I have to see my asthma nurse in April to see how I am getting on. My asthma nurse prescribed the brand of Singulair rather than the generic, Montelukast, which turns out has to be ordered in [I checked at 3 pharmacies] because it is 14 times more expensive than the generic… If this works I hope she will start prescribing the generic because it is crazy expensive! We aren’t sure if Singulair will help me because I do not have allergic asthma but we decided that if we don’t try it then we will never know, and if it does help, then it was an easy fix.

Every asthma review I’ve had has resulted in a load of follow-up appointments and changes to treatment plans so I am hoping that this won’t end up getting too complicated. I just want to be able to exercise when I want without worrying about having to plan it out with increases in meds on certain days and not on others… Is that too much to ask? Apparently it is… although if it works then I will take it. I have a feeling that we may end up increasing my Flutiform to the 250/10 inhaler in the future if this doesn’t work because I am exercising about 5 days a week now so I will have an increased inhaler dosage for 5 out of 7 days every week… It might just be easier, and cheaper, to have an inhaler with a higher dosage, but we shall cross that bridge when, and if, we come to it.

Right now I am super aware of how many prescriptions I have, I am currently up to 5 [or 6 if you include paracetamol] because it isn’t only going to cost me a lot as soon as I turn 19 [even with a pre-payment certificate] but it is costing the NHS a huge amount too… It’s a shame there isn’t an easy fix out there right now. Of course, I can exercise inside when it is cold but that only helps so much, I still get symptoms… and it probably won’t be any easier in the summer since humidity sets me off too. It’s annoying that the point I get to a point where my joints will allow me to exercise, my asthma kicks up a fuss!

Medication 101: Clenil Modulite

Ah good ol’ Clenil Modulite… Like I said earlier, I’m going to be banging out a few Medications 101 since I am a bit behind with them. Clenil was the first preventer inhaler I took back in July 2012 before I moved onto combination inhalers. In the UK Clenil is a very common first preventer inhaler. Clonal modulite contains Beclometasone Dipropionate, a corticosteroid, which is used to reduce inflammation in the lungs and is used to prevent and reduce asthma symptoms. However, Clenil is a slow acting medication and so should not be used in attacks or to reduce acute symptoms.

Doses:

Clenil Modulate comes in 4 separate doses: 50, 100, 200 and 250mcg of Beclometasone Dipropionate per accusation. The usual starting dose for Clenil is 400mcg twice a day [in adults], but can be increased up to 1,600-2,000mcg if needed. Your dose will be decided by your doctor.

I started off taking the typical dose of 400mcg a day via 2 puffs of Clenil Modulite 100 twice a day. Unfortunately, this alone did not control my asthma sufficiently to be used alone and that is why I moved onto a combination inhaler.

Precautions:

Clenil modulite is not indicated for use in an acute attack, or for people who are allergic to beclometasone dipropionate.

Care should be taken when taking Clenil modulite if any of the following applies to you [and tell your doctor if any of these do apply to you]:

  • if you are, or have ever been treated for Tuberculosis
  • if your Asthma is getting worse despite Clenil Modulite [needing your reliever inhaler more often, still experiencing asthma symptoms etc]

Side effects:

  • Allergic reactions – rashes, hives, itching, swelling of face, lips, eyes, throat or tongue
  • Oral thrush – more likely if you take more than 400mcg a day
  • Hoarse or sore throat
  • Changes in normal production of cortisol in body [cortisol suppression] – unusual, and only usually occurs after high doses of clenil for long periods of time
  • Stunted growth – again this is unusual and is associated with high doses of clenil for prolonged periods of time
  • Decrease in bone density, glaucoma, cataracts – again is associated with high doses of clenil for prolonged periods of time
  • Sleeping problems, depression or feeling worried, restless, nervousness, irritability or excitability
  • Headaches
  • Nausea

I was lucky and experienced no side effects from Clenil, although there are precautions you can take to reduce the symptoms of thrush and hoarseness such as taking Clenil through a spacer, and brushing your teeth/rinsing your mouth after taking Clenil.

Pros and Cons

+ Side effects are usually quite mild

+ Can be taken via spacer

+ Some flexibility in dose

+ There are plenty other preventer inhalers to try if this isn’t right for you

Only available in aerosol form [in this brand]

Not available in the US or Canada

Sources:

Patient information leaflet

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]

Freshers’ flu

So I am heading into my third week at uni and so far it has been a blast. I have made new friends, and [thankfully] I have settled in really well. I am quite lucky in the fact that I have always been very independent and I was ready to move out, so this transition, though scary as it was to begin with, has actually been really good for me.

I have been going out a lot with my flatmates and other people on my course, and it has been excellent fun, although it has been very tiring, especially for someone with [self diagnosed] insomnia because I can’t sleep during the day unless I am ill, and I wake up early on a morning so my average hourly sleep was about 4 hours during the first week of uni… Thankfully now it has increased to about 5 or 6 so I am not constantly knackered. However, the lack of sleep in addition to mixing with new people, living with new people, and partying a lot made me more vulnerable to illness and I have ended up coming down with what only can be described as, the dreaded, Freshers’ flu…

It all started last Saturday when I was feeling a little bit off, and I didn’t really want to talk to anyone or to eat anything. I kept getting spells of being boiling hot then freezing cold… but I decided that I would be fine and I went out that night anyway. BIG MISTAKE… Those of you who know me, will know the details of the events that night but for those who don’t, lets just say that you should try to think rationally, and be responsible even when you are drunk. I did a stupid thing that night that very nearly put me in hospital and it ended up with my asthma control being chucked out the window. Every since then I have been fighting to get my asthma under control: bumping up my Flutiform to 3 puffs twice a day, then up to 4 puffs twice a day [so I was essentially taking the equivalent of 20 puffs on the brown Clenil inhaler]… and I was still needing quite a lot of Ventolin throughout the day. Being the person that I am, I figured that I could cope with it and that I would be fine after a couple of days, which I was also wrong about. I had a constant temperature from Saturday through to Tuesday, my asthma just didn’t get better [but it didn’t get worse either, thankfully] and my usual asthma cough became a lot deeper and very productive… essentially I developed a chest infection.

I am registered with a new doctor up here, but I didn’t think I was bad enough to go and see what they said because I have had things like this before and I have always gotten over them after a few days. I spoke to my Mum and she agreed that I should wait and see what happens. Well it got worse, thats what happened. I woke up at about 3am on Tuesday feeling sick to my stomach and wheezing up a storm. I was incredibly short of breath and coughing up massive amounts of disgusting stuff [sorry if that was TMI] and my chest was really tight. I was feeling so ill that I couldn’t even stand up and I had to crawl to the bathroom, which thankfully is only a metre or two away from my bed. When you feel that ill and you have a temperature it is very difficult to think clearly and it is also very difficult to stay calm… my initial thought was that I needed an ambulance, but then I thought that I was so out of breath I probably wouldn’t be able to speak down the phone, so my next thought was that I needed my inhaler… Thinking back, I don’t think I was ill enough to need an ambulance, especially as I hadn’t actually tried my inhaler and in pure panic had crawled straight to the bathroom… My inhaler did work after quite a few hits, I stopped counting after 10 but it was definitely under 20 puffs total and my lungs were responding. Then I thought that I should tell my Mum to come and pick me up and we could go to urgent care to get some antibiotics, but then I figured that since I was breathing a lot easier I could wait until the morning as I didn’t think that Mum would appreciate the wake-up call… but thinking back, that was probably a bad idea as no one knew that I was feeling so ill. Somewhere in that situation I briefly thought of crawling down the corridor to wake up my flatmates so they could get help… but I decided against that too. However, if this ever happens again [and this is advice to all of my readers too] I definitely suggest that you let someone know, because things might not turn out so well… And generally when you are thinking you need an ambulance, you do need one.In the UK there is a service that allows you to text the emergency services if you are in a situation where you find you cannot speak for one reason or another, however you do have to register your phone first before you do this. [PLEASE SEE HERE FOR DETAILS]. I am actually kicking myself looking back because I should have told someone but my brain doesn’t work that well when I have a temperature and so I didn’t think clearly about what could happen.

It’s over a week since I first got sick and I am improving dramatically… The secretions in my chest are a lot thinner and easier to move when I cough although, I am still coughing more that I would like to, my wheezing has been at a minimal for the last couple of days, I am sleeping a lot better, my temperature has been normal for quite a while now except from a little episode yesterday. On the whole I am feeling significantly better, but I would not like to repeat any of that again.