‘People don’t recognise me’ – severe asthma sufferer on ‘horrendous’ effects of steroids

Dr Ellie says to avoid using brown bags for asthma attacks

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Speaking exclusively to Express.co.uk, 28-year-old nurse Rebekah was first diagnosed with asthma at the age six and spent the majority of her primary school years in and out of hospital. But things really took a turn for the worst in 2018 when her condition stopped her from doing everyday things she was used to doing. The NHS explains that asthma is caused by swelling of the breathing tubes that carry air in and out of the lungs. This typically happens after exposure to a trigger, but for some people, like Rebekah, asthma flare-ups and attacks can be triggered randomly. In order to manage her severe asthma, Rebekah took steroids, but soon she started to suffer from severe side effects, making her hesitant to carry on with the medication.

“It was back in 2018, that’s when things got a bit more serious and it stopped me from doing things,” Rebekah shared.

“There was nothing massive that triggered it. And although I had had hospital admissions before, it was going into 2019 that I thought ‘this is for the rest of my life.’

“Although they could give me treatment, I had to make adjustments for life.”

Soon things started to get so severe for Rebekah that she was having hospital admissions at least every month, which started to affect her job as a critical care nurse.

“I would say that 2019 was probably my worst year. I worked in critical care and it was a massive, massive part of my identity that I had worked really hard for but I just couldn’t get back to work.”

It was around this time that Rebekah started to take steroids, a common anti-inflammatory medication that is used to treat a range of conditions. The NHS explains that steroids come in many different forms such as tablets, inhalers or injections and can be used for conditions such as:

  • Asthma
  • Hay fever
  • Crohn’s disease
  • Arthritis
  • Multiple sclerosis.

Despite being life-saving and crucial medication for many people with asthma, the NHS warns that steroids do cause some side effects such as an increased appetite, mood changes and difficulty sleeping. For Rebekah, these side effects from steroids still cause her difficulty to this day.

“I take steroids every day and I had to increase them as well, so in the last three to four years I have taken quite a lot. And it is brilliant and life-saving for my chest but kind of rubbish for everything else.

“It massively affects your mood, especially when on a high dose, you can become very irritable and then low in mood. I also put on a lot of weight, I put on six stone within a short period of time.

“People in the street don’t recognise me, and that’s people I know quite well who would be visibility shocked, and that affects you.

“One of my main problems now is that I have osteoporosis, and problems with my back as well which is quite painful. They also thin your skin quite a lot, I have got horrendous stretch marks, and they massively affect your sleep.

“If I managed to get off steroids it would be great, but things like osteoporosis is going to stay with me forever. I wouldn’t be without them [steroids] but we have a love-hate relationship.”

As well as dealing with side effects from steroid medication, Rebekah needed support in order to mobilise, wash, dress and make meals, meaning for a period of time she had to move back in with her parents.

Feeling “depressed and desperate” in November 2018, Rebekah was referred to a specialist asthma clinic that told her about a life-changing type of asthma treatment called a biologic – a treatment that many who are elligible still do not know exsists.

“I started on biological drugs at the beginning of January 2019 where I had it every month and my hospital admissions reduced to about four or five a year compared to every month. But I still wasn’t able to reduce my steroid dose.

“Then I started a new one in September 2021 and I am sleeping a bit better now and have become a bit more active. It is difficult as asthma is still a massive part of my life and I still very much have good days and bad days, but I don’t dwell on it as much as I did.”

Asthma + Lung UK are a UK-based charity supporting everyone with a lung condition and fighting for everyone’s right to breathe. It is calling for the government to invest more research into lung conditions that affect people like Rebekah.

Asthma + Lung UK’s clinical lead and GP Dr Andy Whittamore explains that severe asthma can sometimes make people feel “out of control”, but what is important is knowing that certain things can make a difference.

Dr Andy said: “In fact, it’s vital you look after yourself. Even if you still have symptoms, managing your asthma well can mean you reduce them as much as possible and lower your risk of having a potentially life-threatening asthma attack. It’s likely your symptoms will be worse if you don’t do the things you need to do to manage your asthma.”
Dr Andy suggests the following ways in which people with severe asthma can try to manage their condition:

  1. Manage severe asthma symptoms – get a written asthma action plan and take prescribed medication.
  2. Team up with your healthcare professionals – keep a diary of symptoms to show your GP and tell your healthcare team every time you have an asthma attack
  3. Keep fit and healthy – eat well, quit smoking and get mental health support if needed
  4. Deal with bad days – follow a daily routine and gain confidence from past successes
  5. Worry less – if you have concerns let your GP or asthma nurse know
  6. Get support – a support network made up of friends, family, work colleagues and a healthcare team can help you manage long-term conditions better.

For people like Rebekah, who are still struggling with asthma and the side effects of steroid medication, she hopes that more research is done to help find new treatments and cures. But for now she has reached a mindset where she is trying not to let her illness impact as much of her life.

She added: “Things are better than what they were a couple of years ago, and I know I am going to have admissions and I know I am going to have flare-ups but instead of stopping what I am doing completely, I can adapt to it. It is the unpredictability of not knowing how you are from one day to the next and the impact that this has on me socially that is really difficult.”

For information and support visit asthmaandlung.org.uk or call the helpline on 0300 222 5800.

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