Category Archives: flutiform

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?

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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: 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]