Some of you lovely people know I have been struggling since the end of February with my voice and an inability to speak for any length of time. I’ve had to rearrange my Practitioner course for this Wednesday 24th of May. I am so thankful for the patience and kindness of everyone who has been affected by this.
I have not been writing or keeping in touch as much as normal as I have been caught up in my own personal storm. I’ve decided to share what has happened to me in the hope that it may help some of you and your loved ones.
In November last year, I switched to a new inhaler for asthma. It was first mentioned to me in summer last year but my gut told me to stick with what I knew. I then had a conversation with a friend who is a Practice Nurse who said that her patients had found the inhaler (called Fostair in the UK) to be a good move. Unfortunately, I went against my instincts and switched. All was well in the beginning, but then things changed.
During the last week of February I started with a really sore throat and then completely lost my voice. I thought I had an infection but it was clear that this was not the case as I had no response to steroid tablets or antibiotics, neither of which I take lightly. This hoarseness continued. The soreness left me but I noticed heavy bruising around my ankles which arrived without any knocking or banging, it just quietly appeared. I went from feeling very healthy to feeling like I’d finished an ultra marathon whilst sweeping up in a cement factory.
At the beginning of April, I was five weeks in. My vocals ranging from near silence, to the sound of a teenage boy’s breaking voice, I realised that the only possible thing that could be making this happen was something I was regularly spraying onto my throat – Fostair. Because it had worked so well with no obvious side effects up until the end of February, I had not associated it at all and I’d had none of these side effects with inhalers I used previously.
I should state at this point that many using this drug have had no side effects so please don’t panic if it’s suiting you. I just want to highlight this problem if you find yourself in the same boat as me. It appears many people notice side effects immediately which does make things slightly easier but no less distressing.
Trying to report harm
Patient information leaflets come with every drug. They tell you the potential side effects and warn you to contact your doctor immediately if certain ones affect you. However in my experience, the doctors involved in my care were completely dismissive of this instruction. I was ignored repeatedly. No information was taken or recorded. Each GP might just as well have been saying ‘nothing to see here, let’s look over there…’
This is not my first experience of trying to detail side effects and having concerns swiftly brushed under the already lumpy carpet. I was at an appointment with a B12 deficient patient who was taking Aripiprazole for psychosis. He experienced swelling of the eyes and the psychiatrist simply stated ‘oh that’s very a rare side effect’ and tried to ignore it. I stated ‘that it happens every day to this patient therefore it’s very common for him’ the psychiatrist didn’t know how to respond. And yet he could have helped enormously by validating the patient’s experience, by noting the side effects by discussing the MHRA Yellow Card (a UK government drug harm reporting scheme) and by helping the patient to understand how long they could expect to be affected.
A friend of mine had a coil fitted and within six months had unbearable symptoms and repeated doctors appointments for the state of chronic ill health that she now found herself in. Over the next year, due to the symptoms she experienced, she was offered: Antidepressants, HRT and antibiotics, she had also changed her diet drastically. Each time she suggested the coil might be at fault, she was told absolutely no, it couldn’t be that and her requests for removal were repeatedly denied.
She battled on, feeling dreadful and completely exhausted, a mother of two young children and holding down a full-time job. On another of her umpteen visits to the doctor her white cell count was found to be high so she was then screened for cancer which thankfully was not present.
Finally, after stating to her doctor, ‘I have tried EVERYTHING you have asked of me and now I want this coil out’, she got her wish. But this was still a battle, she had to stand her ground and fight her corner even at this stage, eighteen long months after it’s fitting. She felt instant relief upon removal and within days all her myriad debilitating symptoms resolved. But she’ll never get that 18 months back.
Colluding in shared ignorance and remaining silent about these harms never, ever benefits the patient.
How many GP appointments take this same route?
How much time is wasted?
How many lives are negatively affected due to being dismissed and shut down?
Why aren’t our doctor’s helping?
Why don’t they want to fill in the MHRA Yellow card or urge you to do it?
My side effects
The side effects listed on the PIL for Fostair described much of what I was experiencing: But, of the common side effects I had two;
The Uncommon – seven
The Rare – two
The Unknown – two
I found it odd that the heavy bruising around my ankles that I experienced was not even listed in the ‘Unknown’ category and yet if you research patient stories with Fostair as I have, others have also complained of this.
Anxiety and depression can also be side effects of this inhaler and others I know experienced this quite early on in its use. My overriding symptoms was the loss of my voice, difficulty breathing and loss of hearing and they came in succession over the past three months.
It’s also worth noting that a friend of mine who has a thyroid issue and was incorrectly switched onto Fostair kept having to clear her sore throat and complained of voice changes. Despite the fact that there are warnings about people with over active thyroid and Fostair usage, her symptoms were blamed on her thyroid dysfunction. There are many warnings so perhaps familiarise yourself with them in case you are having an issue too.
If it ain’t broke don’t fix it
I have researched this subject fairly widely now and have found that there seems to be a movement among many Practices to ‘switch’ asthmatics to Fostair as a matter of course. See image below. It seems the line generally used on patients is ….‘your asthma is not well managed, you are using your ‘reliever’ too often rather than just using your ‘preventer’ so I advise you change to Fostair.’
What the ‘switcher’ may not be pointing out, is that they are changing you over to a preventer and reliever in one – so what’s the difference? You are sill using a preventer and reliever and if it works well for you, fine. However, if this inhaler doesn’t suit you, the only benefit gained is that you are having to press your finger down on your inhalers four times less a day. The rationale for changing simply doesn’t make sense when it’s put to us in this way.
Two friends of mine have been offered this switch to Fostair even though both are very happy on the treatment they are on. They both described the irritation of the asthma nurse for their non compliance. Why is this? What exactly do they get out of switching you if they’re moving you against you will? Maybe this Formulary document and its links gives some insight?
So think about this, if you are given the same ‘choice’ and you are happy on your current medication, perhaps it’s ‘better the devil you know’ rather than the potential of experiencing harm?
Some people haven’t really been given a choice. They’ve been pressured into switching and after experiencing problems, they’ve found it very difficult to be prescribed their previous medication.
I had previously understood spacers only to be used by people with poor inhaler technique but advice has changed. It seems that most asthmatics would benefit from their use, but this Information may not be passed to patients effectively. I had never used one until recently.
Further investigation and a long chat with a nurse at Asthma UK revealed that they feel Fostair absolutely MUST be used with a spacer. But, back in 2009 it was not licenced for use with one. The spacer allows you to draw in the inhalant at the speed of your breath rather than at the speed of a train and this has to be a good thing. Your asthma nurse may not be recommending a spacer to you, so perhaps it’s time to get one prescribed and maybe enlighten your nurse at the same time?Please see this film from Pam on correct use of a spacer.…it may be enlightening.
I stopped using the inhaler immediately I realised what was happening. I’m sure some would say not to do this but I couldn’t bear to use something that was harming me. I rang the doctors to tell them about my experience and they insisted someone examine me urgently ‘in case something more sinister’ was going on…. They suggested a chest X-ray and camera down the throat. I declined these two offers and asked for help in managing what was happening and for an idea of when I might improve. What interested me was that out of seven doctors I have spoken to (five I saw face to face), none apart from one really wanted to admit it was the inhaler and none were interested in the bruising, just a real push to get me to have an X-ray. My research lead me to think that what I was experiencing was vocal cord dysfunction, since my chest was clear and I had no infection.
One doctor deduced that I would be free of symptoms in ‘two weeks’. That would take me to seven weeks from the initial symptoms. Sadly I just worsened.
The third doctor I saw told me I had a ‘chest infection caused by a sinus infection’ and I ‘must have suffered headaches,’ I said I hadn’t experienced any of what he’d detailed but he’d made his mind up so that was that. It was very bizarre. No listening, just queuing up ridiculous responses to my questions because he’d already signed up to his perceived diagnosis. He prescribed me antibiotics that he said he knew I wouldn’t take. He was right about that, I had no infection so why on earth would I do such a thing?
Apparently, doctors want to send you for an X-ray if you have a prolonged cough or sore throat with an unknown cause. That makes some sense, but I felt that we both knew the cause and I couldn’t understand why I needed a chest X-ray when my throat housed the problem. There was a real reluctance to acknowledge or discuss the side effects I experienced. Isn’t that a bit odd?
One doctor I saw was really concerned that I refused another offer of an X-ray, telling me I might have ‘laryngeal cancer’. I reiterated that we knew the cause so that was something I wouldn’t be worrying about.
What strikes me about all this is the lack of interest in the harm caused by something prescribed to me. The lack of interest in detailing this harm or in helping me to deal with and understand how long I could expect to experience the side effects. My problem was that I was continually asking for reassurance and a time frame for improvement but how could I possibly have achieved that?
I realise that doctors can’t actually help you to understand how to heal from drug side effects if they ignore it’s happening in the first place. They don’t gain any experience of how other patients have come through it. We are simply left to work it out for ourselves. My hope is that others have had a better experience than I have had and that their doctor actively listened and tried to find solutions, I’d love to hear your experiences!
My local pharmacist urged me to ‘fill in the Yellow Card’. He had heard of others in the same position as me and showed care and concern. I would also urge you to fill in the Yellow Card if ANY drug causes you harm. It used to be that only doctors or pharmacists could do this but now we have the opportunity. This is how we can hopefully help others who come after us with the use of the same drug.
I was concerned that people using inhalers such as Fostair (who have no experience of other inhalers available) may be mistaking the side effects, especially if delayed and cumulative like mine, for something else. They may then find themselves on a conveyor belt of unnecessary, stressful and invasive exploratory procedures.
Three months later…
I have tried many things in order to heal my symptoms. I avoided caffeine, a good friend introduced me to lymphatic drainage exercises. I’ve also used bee propolis spray, Erisimo mother tincture (known as the singers herb), saline and salbutamol in a nebuliser but to no avail. I’ve tried to be patient, even though these past three months have been both terrifying and beyond frustrating.
After some vigorous and transformative acupuncture last week, I am ecstatic that my voice is back, my breathing and my hearing is so much better.
What I have described here is the antithesis of what happens with B12 deficiency
B12 injections are regularly stopped unnecessarily and not because the patient has reported harm but because the doctor perceives it. Even though the patient in front of them is often crying and pleading with despair at this safe and essential treatment being stopped.
How is that we have these two starkly opposite situations? One, a vitamin that people need and where harm in a patient on treatment is non existent, against drugs which can and do regularly cause harm but the effects are ignored and often the patient is encouraged to continue with it.
It’s plain to see that some GP’s get into the groove of protocol and procedure that is of little benefit to the patient. They can, by active listening help to build a bigger picture of drug harms, but is it in their interest? Are they allowed? Have they got the time? My own described experience of the dismissive nature of visible and audible harm creates a profound lack of trust of those in whose hands we are meant to place our lives into.
So the lessons for me remain…
1. Trust your instincts and go with your gut.
2. Fill in the Yellow Card if you have been harmed by any medicine.
3. Question everything that you are blindly expected to go along with – see if it makes sense, see if logic is applied, even if questioning makes the person you are questioning angry.
If something doesn’t make sense then clearly, it’s complete nonsense.
I am none the wiser about what actually happened to me. I only know that it has been a long slow recovery.
I am so grateful for having my voice back, for my family and friends and the users of my site who have ridden this wave with me, for Mrs G’s acupuncture, for Patricia for finding her again and for Damian’s patience in having to repeat just about every word he’s said over the past month.