Tag Archives: seretide

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!

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A failed 12 of 12

So I tried and failed to do a 12 of 12 today so I am going to incorporate the pictures I took today with just a general blog post/update.

Those of you who know me know that I haven’t slept well at all since February… Partly because the bed in my flat is not comfortable and partly because of my joints but mainly because the people in the neighbouring flat are so loud. They play instruments and video games at all times of the day and night so I am lucky if I only wake up twice in one night, most night I am woken up between 3 and 5 times, more if I am unlucky. But because of all this I am pretty exhausted so on days like today when I have to get up even earlier than usual I find it really hard. 

The past few months I have had increasing amounts of hair loss to the point I need to unblock the plug everytime I shower. Everyone experiences hair loss every day but when it has suddenly started increasing, it is a bit worrying. If you add that into my other new/increasing symptoms like my nose ulcers it pretty much points to autoimmune. But my mum was getting worried that I could be slightly anaemic and wanted me to get it checked out by my GP.

Today was the day I went to the GP about it. I only rang yesterday lunchtime and managed to get an appointment for 8.10 this morning which was surprisingly fast but did mean that it was an earlier start than usual. The second problem, or what I thought was going to be a problem, was that this appointment was supposed to be with a GP that I vowed I would never see again… Why? Well that’s because in December right after I had been diagnosed I went to see this GP who turned around and told me straight out that I was going to become disabled because I have an autoimmune condition that isn’t magically going to go away?! Who says that to anyone! He wasn’t an expert in my condition and I was literally so appalled and gobsmacked that I couldn’t even think of anything to say, I literally just sat there and gawked. But hearing that this was the only appointment available I decided to give him a second chance… 

I turned up at the Surgery for 8.05 so there was 5 mins before my appointment… Turns out I could have turned up at 8.30 and still been early.  

 

I had the whole waiting room to myself and the GP was half an hour late! Not a good start.

But when I finally got in with the doctor he was brilliant! Totally different to what he was like last time! I did wonder if I was actually seeing the same doctor at one point. I wasn’t met with the cold GP who appeared not to care but I was greeted by a guy who was trying his absolute to do his best for me. 

We started by checking my asthma out. I switched from Flutiform 125/5 (3-4 puffs twice a day) to Seretide 125/25 2 puffs twice a day which seems illogical because that is actually a decrease in the total amount of inhaled steroid I would be taking a day but I did it anyway and it worked!!! I have only had one attack (actually it was 2 but it was one after another so I am not sure if is a continuation of the first attack or if it was actually 2 separate attacks) which was my fault because I exposed myself to a trigger stupidly and then suffered the effects. But if we ignore that then I have had virtually no symptoms at all! Not even during exercise! That is pretty much a first ever since I was diagnosed! My GP was actually ecstatic, he was so happy for me. We even had a little competition with peak flows… He betted [Note: we didn’t actually bet anything] that I could reach 450… 1st blow was 420 so not quite there. 2nd try 440! 10 points off!!! 3rd attempt 440… So I didn’t quite get the goal but it was very close and 440 is a good peak flow value for me. And if you accompany that with my lack of symptoms your doctor will write down on your records ASYMPTOMATIC!!!! So the decision is to stay on this dose of Seretide indefinitely, either until I feel that I can step down or if I need a higher dose for some reason. It isn’t clear why my asthma is controlled on this dose of Seretide when Flutiform, Symbicort, or a combination of Clenil and Serevent didn’t help before but as long as it is helping I don’t really care about the science behind it.

Then we went onto the hairloss and ulcer. The GP thought that these were probably because of my autoimmune condition… Although a side effect of Plaquenil/Hydroxychloroquine is hairloss. Having said that, it is unlikely that the Plaquenil is causing my hair to fall out since I have been taking it since Novemeber and this is a recent symptom. As I said earlier mum thought that I could be slightly anaemic which I mentioned to the GP and he was more than happy to run some bloods for me. I got my ESR (Erythrocytes Sedimention Rate – I.E inflammation levels), LFTs (Liver Function Tests), HbA1C (looks at blood glucose levels over a period of time) and my thyroid function tested as well as the usual CBC (Complete Blood Count). 

The actual blood test was fine except I bled through a cotton wool bud and then proceeded to bleed out the side of the tiny little plaster they gave me.

 

But apart from that everything was fine and I only got 3 vials taken, which, if my memory serves me right, is the smallest number of vials I have ever given? It has bruised pretty well though.

So that all happened before 10am and that was essentially all I did all day, apart from some revision which was broken up by watching episodes of Orphan Black… Unfortunately I have finished every episode of Orphan Black on Netflix so I feel a bit lost now.

Like I said, I have massively failed on that 12 of 12 since I only took 3 photos but I was in my room literally all day apart from for the appointment  and the fire alarm that went off (if you’re a student living in halls you will totally understand). So there is an update and a totally failed 12 of 12… Maybe we should just call it a 3/12?

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.

Asthmaversary

Well today is my first Asthmaversary. Well technically it is my 5th year of having asthma but I have only been officially diagnosed for a year.

So I thought I would show you some of my asthma family, or should I say, inhaler family.

Over the last year I feel that I have matured a lot. I have learnt how to manage my prescriptions, manage doctor appointments and travelling to and from my doctors and nurse appointments. And I have also learnt how to manage attacks and exacerbations. I know when I should increase my preventer inhaler and I know when I should drop it back down to the original dose. I know the sort of area that my peak flow should be in and although I haven’t managed to keep it in the green zone for the majority year, I feel confident enough to deal with any symptoms and I do know when it is time to see my nurse or the doctor.

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So those has been my asthma pals for the last year. I must admit 3 inhalers are missing, two ventolins and one Symbicort. One of the ventolins had water damage, and since it is a dry powder inhaler I meant that I couldn’t use it again. And the other ventolin and Symbicort are in the pharmacy. I should be picking them up early next week.

Technically it has been over a year since I got my first ventolin so I thought I would show you my asthma journey from then until now.

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So originally I just started out with a reliever inhaler and I had this for 2 weeks before I had another inhaler added on.

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So like I said above after 2 weeks of only being on ventolin, my asthma nurse added clenil modulite to help prevent asthma attacks and symptoms.

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After about a month of being on ventolin and clenil, serevent was added. Serevent is the small green (it doesn’t look green, but it is green) inhaler. Serevent is a Long Acting Beta-2 Antagonist. Which basically means that it keeps my airways open for 12 hours rather than just 4 like ventolin does. Serevent is a controller medication, added when you asthma is not controlled with only inhaler corticosteroids (such as clenil) and reliever inhalers (including bricanyl, ventolin and xopenex).

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Then we decided to add seretide which is a combination inhaler, rather than having 2 inhalers to take morning and night, my nurse and I agreed that it would be easier just to have one inhaler morning and night. It was at this point that I also switched to a dry powder ventolin as I felt that it was a lot easier to use when my hands were sore and stiff.

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So early this year my nurse and I agreed that I wasn’t doing very well with seretide. Especially since I kept wheezing after I had taken it. Initially the nurse thought it was the dry powder but since I didn’t have issues with the dry powder ventolin she figured it was the serevent component of the seretide, which had caused some issues earlier.
So I was swapped to Symbicort which I feel has made a massive amount of difference. And although for the majority of the year my peak flow was hanging around 60-70%. But when I did get a cold, which was fairly frequently, the attacks weren’t as they had been before I started the Symbicort.

I have said previously that I am pretty settled on Symbicort, of course there is fine tuning needed, but I have been on Symbicort longer than any other medication (except ventolin).

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It is thanks to the Symbicort and the ventolin that I have been able to live my life to the full most of the time.

But if I didn’t have asthma, I think it would have taken me longer to learn certain things about myself, as I wouldn’t need to be in a position where I would need to know these things. Such as, in an emergency I can stay calm. This doesn’t strictly apply to asthma since my attacks are not bad enough to be called an emergency. But the inability to breathe during attacks is scary and I still manage to think clearly throughout. Even a couple of months ago when I was choking I stayed calm and was able to clear my airway on my own.

I also feel like I am a better advocate for my own health, and I help make the decisions about my health care rather letting health care professionals decide certain things for me, and that makes me feel like I am in more control of my health than I was before.

And if hadn’t been diagnosed with asthma, I would not have this blog, I would not speak to new people daily about asthma and other chronic illnesses. I would have never joined twitter in the aim of finding people who I can connect too. I would still be naive of some chronic conditions such as diabetes, both type 1 and 2 (thanks to GG and Scott and Navy Kitty for teaching me so much about diabetes, I really appreciate it). I have also “met” people over twitter with cystic fibrosis, people who have had heart transplants, liver transplants, lung transplants, people with mitochondrial disease, people with lupus and other rheumatic conditions and of course other people with asthma. I must say having a blog has been an eye opening experience, and I haven’t even had this blog for a year yet! I wonder what will happen between now and my next Asthmaversary. This is an adventure.

Oh and I forgot to say, I bought myself a phone case for my Asthmaversary, not because I have asthma but because I have learnt so much and survived this year pretty unscathed.

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Bye Bye Seretide. Hello Symbicort

I had another asthma clinic appointment last Wednesday so please forgive me for the late update.

I believe that the appointment went quite well since I have managed to switch from seretide to symbicort like I wanted to. At first my nurse really didnt want to switch me but after I had explained how I was waking up most nights and was still needing ventolin multiple times a day and the fact that I hadn’t got my peak flow past 70% for ages she agreed to switch me. Thing is because my peak flow has been so low for so long she has messed around with my action plan so now my best is only 400 instead of 450 which I’m really not too impressed at since I have been symptomatic when I was getting peak flows of 350 which according to this new play is about 87% but on my old plan was 77%. So I am quite annoyed at that.

I am hoping with this change to symbicort that my peak flow will be reaching 450 again and soon. My nurse was also worried because I am going skiing in two weeks (WOOP!) and she thinks because my asthma is still uncontrolled it will really flare so I’m going back on the 13th just before we go to get a little check up and she said she is probably going to prescribe some emergency pred, which I would be very grateful about!

Anyway back to symbicort. She switched me to the equivalent dosage I was on for seretide which is symbicort 100/6 2 puffs bd (twice a day) to start with then I am allowed to move up to three puffs twice a day if I feel I need to and then I’d be moving up to symbicort 200/6.

My initial impressions of symbicort are quite good, I’m having minimal if any wheezing after I take it and no chest tightness at all. But the one thing I am worried about is that the LABA is stopping working after about 8 or 9 hours, and then the coughing and wheezing starts. So I’m going to see if it is possible to take another puff at lunch to last me till the evening, but she might just suggest going straight up to 3 puffs twice daily, I have no idea really. One downside is that my hands are shaking like a leaf but I think that after my body gets used to this LABA it will sort it’s self out.

So I’ve taken a picture of my symbicort, I always like pictures in blogs and its one of the things I keep meaning to include more of so here it goes 🙂

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And this is one showing the actual inhaler without the lid on:

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While I was there my asthma nurse also gave me a turbohaler whistle which has absolutely fascinated me. It tells you if you have an inspiratory rate of 15l/min or more which is needed to take a turbohaler. So basically you use it exactly the same as a turbohaler and if it whistles when you inhaler it means you are good to go. Here’s a wee picture of it:

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I’ll be posting a guest post soon by Nicole and her life with type 2 brittle asthma.

Im tired of asthma now

I first had asthma symptoms when I was 11.
I got my first inhaler a few weeks before I was 12.
I was told that I was not asthmatic 2 months after I was 12.
I had my first proper attack when I was 13.
I was playing cricket.
I didnt tell my parents.
I borrowed a friends inhaler.
I thought that would be the end of asthma for me.
I suffered with weekly (minor) attacks until I was 16.
I then had the courage to go to the doctors.
My parents still dont believe I have asthma.
I was given ventolin on the 26th June 2012.
I was given my first peak flow on the same day.
I was given clenil modulite on the 19th July 2012.
I was given serevent on the 6th August 2012.
I was given my ventolin accuhaler on the 7th of August 2012.
I was given seretide on the 31st October 2012.
The last time I was in the green zone was the 5th November 2012.

I have been on an asthma adventure but I would like it to end soon. I know other people have asthma far worse than me and require home oxygen and numerous nebs daily and I consider myself lucky, but I still find it hard.

I first thought seretide wasn’t working on the 1st November 2012.
I am still waiting for it to work.
It isnt going to start working now.

On a Wednesday I dont start college to 11.50
It takes me 50 minutes to get to college by bus.
The doctors opens at 8.30
I will have 3 hours and 20 minutes to see a doctor on Wednesday.
I should go.
The real question is do I have the courage to tell my parents that this is a problem?

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.