Tag Archives: Flutiform

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.

Medication 101: Flutiform

This is my second post that I am going to do for Medications 101 but this is the first post I will be doing on an Asthma Medication.

I have been taking Flutiform since March 2014 so about 9 months now and so far it has controlled my asthma the best out of every inhaler I have tried to date. Flutiform is a preventer inhaler meaning that it is used to reduce the inflammation in the lungs, therefore reducing asthma symptoms, and hopefully preventing attacks. Flutiform is also a combination inhaler meaning that it contains 2 different medications, one of which is a steroid used to reduce inflammation in the lungs, and the other is a Long Acting Bronchodilator [Long Acting Beta 2 Antagonist… AKA LABA] which is used to relax the smooth muscles in the airways therefore reducing symptoms of asthma. LABAs work for approximately 12 hours [except for Vilanterol which works for approximately 24 hours and therefore only needs to be taken once a day] and are used to help reduce the amount of Short Acting Bronchodilators [Short-acting beta 2 antagonist… AKA SABA] such a Salbutamol [Ventolin] and Terbutaline [Bricanyl] that a person needs.

The steroid component of Flutiform is Fluticasone and the LABA component is Formoterol.

Flutiform tends to be indicated for use in people ages 12 or older with moderate to severe asthma more so than in people with mild asthma, where the use of a steroid inhaler alone doesn’t control a persons asthma.

Doses:

Flutiform is available in 3 different doses; the 50/5 [containing 50mcg of Fluticasone and 5mcg of Formoterol], the 125/5 and the 250/10. Most people take 2 puffs twice a day through a spacer however your doctor will decide the best dose for you.

I have been on the 125/5 and the 50/5 doses mainly at 2 puffs twice a day but I have been allowed to increase the dose of the 125/5 inhaler to 2 puffs 3-4 times a day [could also be taken as 3-4 puffs twice a day] in an attempt to avoid prednisolone during a flare… and it worked!

Precautions:

Flutiform isn’t indicated for anyone who is allergic or hypersensitive to Fluticasone or Formoterol or any of the ingredients that Flutiform contains [see section 6 of this leaflet].

You should also speak to your doctor before taking Flutiform if you have or have had TB [Tuberculosis] in the past, if you have a chest infection, if you have any heart problems, if you have an aneurysm, if you have diabetes, if you have high blood pressure, if you have an overactive thyroid, if you have low levels of potassium in the blood, if you have poor adrenal gland functioning or if you have liver problems.

You should also talk to your doctor about before taking Flutiform if you are taking certain medications including beta-blockers, theophyllines, adrenaline and adrenaline-like medications, additional LABAs, some antihistamines, some high blood pressure medications, some heart failure medications, some anti-depressants, some antipsychotics, some anti-fungal medications, some anti-virals, some antibiotics, some Parkinson’s medications, some medications used to treat an under active thyroid, certain medications used to treat Hodgkin’s disease and some medications used to induce labour.

Side effects:

[I have indicated the side effects that I have experienced with an asterisk]

Uncommon side effects occurring in approximately1 in 100 people include:

  • increase in blood glucose level
  • worsening of asthma
  • headache
  • shaking *
  • irregular heartbeat or palpitations *
  • dizziness
  • changes in voice/hoarseness
  • dry mouth, sore/irritated throat
  • swelling of hands, ankles or feet

Rare side effects occurring in approximately 1 in 1000 people include:

  • thrush
  • inflammation of sinuses
  • fast heartbeat *
  • muscle spasms
  • coughing or shortness of breath
  • diarrhoea
  • indigestion
  • difficulty sleeping
  • agitation
  • rash
  • high blood pressure

Pros:

+ Many of the side effects are quite mild

+ There are quite a few other combination inhalers available if this one isn’t the right combination for you

+ Can be taken through a spacer as it is an aerosol which increases medication delivery, while reducing the risk of thrush

+ There is some flexibility in doses

Cons:

Is not available in the US or Canada

Is only available as an aerosol

Sources:

  • Patient information leaflet [See here]

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.

Bad Asthmatic

If anyone has read Rick Frea’s blog on HealthCentral (see here) you will be familiar with the list of personality types (see here)that Rick has come across in his work as a Respiratory Therapist. When I was first diagnosed I found this post extremely useful in helping me to become the best asthma patient I could be.

I used to be what Rick describes as a “Phlegmatic Asthmatic” which is someone who is characterised as remaining calm even when they are having trouble breathing. Although I am a stress-head, I have found that I am able to remain calm in situations such as asthma attacks and other medical situations such as seizures (I have a family member with Epilepsy) which has significantly, especially when the situation is classed as an emergency. However, more recently I am kind of ashamed to admit that I have not kept up with my asthma treatments and my mental attitude was not what it should be. I have had a slightly self-destructive attitude recently, which is my response to what is going on in my life and I haven’t taken Flutiform in a few weeks. No, that doesn’t mean that my asthma is fine with nothing. In fact the opposite has happened and I have had to use Ventolin a lot recently but that is my fault. I basically went from a person with relatively good control over my asthma, to someone who had control similar to when I was first diagnosed before the LABA which was upsetting,  but it still took me till my friends gave me a kick up the backside to get back on track. I have a family member and a close friend who are both very ill and I was too busy worrying about them and looking for clinical trials to think about my health, and it wasn’t till my friend pointed out that being ill myself would not help the situation at all.

I also owe everyone who has helped me out over the past few weeks a big thank you, especially Elizabeth, GG, and my group of girlfriends who I love to bits! I am back on track with my asthma treatments as of yesterday and I am feeling better despite still struggling with my good ol’ asthma cough. I am going to be a Phlegmatic Asthmatic again as opposed to the Goofus Asthmatic that I have become.

The wonders of Flutiform

Every time I see my asthma nurse it feels like my asthma plan is getting more and more confusing. Recently my lungs have been good! I have only been in the pool environment once in the past couple of months which is probably a large contributory in the fact that I have only had one (pretty scary) attack since I started Flutiform in March. My asthma nurse and I discussed how much my asthma is affecting me, and compared to before I am doing really well, my Ventolin usage is right down, I have hardly any nighttime symptoms and my peak flow is relatively stable. So we decided that we can reduce my Flutiform dosage from 125/5 2 puffs twice a day, to 50/5 two puffs twice a day… Now, we do recognise that dropping my total daily dosage of Fluticasone (the steroid component of Flutiform) from 500mcg (equivalent to 1000mcg Beclomethasone) of  to 200mcg (equivalent to 400mcg of Beclomethasone) is quite a drop and we have no idea how my lungs are going to react since the last time we attempted to reduce an inhaler I ended up having an attack. But right now I feel confident that my lungs are up to this reduction, and so I am going to give it a go.

I asked the nurse what I was supposed to do if I started yellow zoning, or having issues so we decided that whilst my main inhaler will be the 50/5 I will also have the 125/5 on my prescription and I will start that inhaler for a few weeks when I start having issues. So this means that I will have 2 different doses of Flutiform to work with which makes my asthma plan a lot more flexible but it also makes it somewhat more confusing. However we have decided that if I feel like I need the 125/5 instead of the 50/5 then I can ring in and she will move me onto the 125/5 fully.

We also discussed why we thought Symbicort was making me cough, and  the nurse agreed with my GP that the dry powder was causing paradoxical bronchospasms and that I shouldn’t try another dry powder inhaler… which is a shame because I did prefer the dry powder inhalers delivery system but if it makes me sick, I’m going to give it a wide berth.

I also explained that I am possibly going to university in September and that I am slightly concerned about prescription costs and having everything sorted for university. Apparently I can get an exemption form so I wouldn’t have to pay for prescriptions until the end of university, which means I don’t have to worry about prescription costs until then. And my asthma nurse is also organising me to go in for my flu jab at the start of September so I will be covered. And she also said to start looking for a GP surgery in the city where I will be staying as soon as I know that I will be going to university.  So now I’m feeling relatively relaxed about the whole thing because I know what is going to happen.

There aren’t many words to describe how happy I am about this reduction in steroid dose, this is the first time I have actually had a reduction in dosage… We attempted to reduce Symbicort before but that just went wrong straight away but I am feeling so much better than I did when we tried to reduce the Symbicort so I’m feeling pretty confident that this will work… and if it doesn’t, we have a plan for that too.

World Asthma Day 2014 Q&A

Today is World Asthma day and in an attempt to raise some awareness about what it is like to live with asthma (from my perspective) I’m going to be answering some questions that my followers have e-mailed me. [Sorry for the late reply for those of you who have asked me questions!!!]

[Note: I have paraphrased some questions]

How were you diagnosed with asthma?

I was having issues with symptoms when I was exercising and people in my Cricket club were starting to make comments when we were playing matches about how loud my wheezing was, or they would ask me if I was having an asthma attack etc. So I headed off to the GP who sent me to the asthma nurse for a Spirometry. Basically, at that point, my Spiro was normal (because I wasn’t having symptoms) so my nurse and I decided to try a peak flow for a few weeks. Based on the massive variance in my peak flow, coupled with symptoms, I was diagnosed with asthma.

Do you see a consultant for your asthma?

Nope, I’m under the care of an Asthma Nurse (who is actually a Diabetes Nurse) and my GP. I don’t have severe asthma so I don’t need to see a consultant.

Why did you start this blog?

Basically, I started this blog to try and raise awareness about asthma and other chronic illnesses, and also to share my experiences with asthma (and bad joints) with other people. I found it extremely helpful to read blogs after I was diagnosed, so you never know… someone might find this blog helpful.

Are you worried about going to University?

Erm… I’m going to presume you mean, am I worried about my asthma. Well that would be a yes and a no. I’ve never had severe asthma, or had attacks that have landed me in hospital and I feel quite safe in the knowledge that I can manage my asthma, and attacks, fairly well by myself. And, of course I know when I need to see my GP. But then I am slightly concerned about being able to afford my medication, thankfully there are pre-payment schemes that are cheaper in the long run but there is always that worry in the back of your head. I’m very fortunate to live in a country with a National Health Service that subsidises the cost of medications, otherwise I would be forking out a fair bit of money.

Does asthma affect your life much?

Well, asthma is always in my thought processes when I go out… Money, check. Bag, check. Inhaler, check. But overall asthma doesn’t play a massive role in my life, I don’t have severe attacks, and I am pretty well managed. But of course, those nights when your asthma isn’t behaving it’s self as well as it should are rough, or if you are having a bad day, that’s hard. You can’t completely separate your life from asthma because you are living with it, but I am lucky enough that I don’t have to think about carrying around a portable neb or bringing umpteen different inhalers with me.

How do you go about getting an asthma plan?

I asked for one… When I was getting put on my first combination inhaler (Seretide, AKA Advair) I figured it was time to have a better understanding of my asthma and what I should do when.

If I were you, I would either ask your GP/asthma nurse or your consultant, if you see one.

How did you find out your triggers?

The hard way… i.e. by being triggered. I don’t have allergic asthma so allergy testing would be pretty useless for me, so I just made a note of when I h attacks/exacerbations and what caused them. Of course it isn’t always that easy, and sometimes multiple factors play a role e.g. having a cold and meeting another trigger, or having a cold and meeting something that doesn’t normally trigger you, which causes an attack/symptoms (or at least, it does for me).

 

So that was my Q&A for asthma, I have another one to raise awareness about Arthritis/bad joints that I will post in the next few weeks.

If and if you have any questions feel free to comment below or visit my “Contact me” page.