ABPA and Bronchiectasis a Patient Story
I was diagnosed with ABPA with bronchiectasis in August 2021 at the age of 58, after a year of investigations. Before my first symptoms appeared, I considered myself pretty fit (lots of cycling and some walking and gym work) and my health generally good (moderate asthma well controlled on inhaled steroids and long-acting beta agonist).
My earliest symptoms began in February 2019 when I could not get all the way up a hill on my bike, and had to walk up. In retrospect, my husband had been commenting on how out of breath I was at the top of hills for a while, but I dismissed it as “just my asthma”.
Over that spring, I developed a dry cough, which was worse on movement or deep breathing, but did not cause problems at night. My lungs were easily irritated by things in the air (stir frying with chillies was a real cough provoker!).
In June I was on holiday at moderate altitude and noticed significant issues walking uphill – it felt like I was not getting enough oxygen. A follow up x-ray and blood tests did not show up anything unusual. Over the following 8 months I had cycles of cough, followed by general malaise, then coughing up plugs of dark green phlegm, then I would feel better for a few days and it would start again, but I was still cycling to work etc so thought nothing serious could be wrong.
In May 2020 I had high evening temperatures (non-covid) but no other symptoms, which resolved in 5 days. This returned in June/July for nearly 3 weeks, at the end of which I coughed up large quantities of yucky tasting phlegm (I was cycling at the time so could not spit it out to look!). The temperature resolved after this but I did contact the GP – I had routine bloods done and was referred for a chest CT as they thought bronchiectasis may be the issue. I bought an oxygen saturation monitor for use at home and noted that during exercise my saturations dropped to 82% cycling up a moderate hill, and it explained why I was struggling with walking and cycling up hills (and stairs). The oxygen levels returned to normal at rest. I had also lost over 4kg (about 9lbs).
The CT and blood work did not meet the threshold for ABPA, but did show bronchiectasis. A bronchoscopy ruled out various other possible diagnoses, but did not help identify the actual diagnosis. After a year of checking for lots of respiratory illnesses and a bout of pneumonia, repeat IgE blood tests were high enough to be diagnostic for ABPA, and I commenced prednisolone treatment. The response was good, but not good enough (second CT only showed marginal improvements) to stop after 6 months which is what had been planned initially. But I was reasonably stable on 5 mg for a while.
In the Dec 2022 I started having episodes of cough and phlegm with a moderate drop in peak flow, and took antibiotics as instructed by the consultant respiratory doctor. But this happened almost monthly, and my IgE levels were rising, so I was commenced on antifungals (Itraconazole) in March 2023. After further lung function tests and an asthma team review of my case I was accepted for biological treatment with Omalizumab (Xolair), and since commencing this I have not had any further exacerbations of the ABPA, but it will be interesting to see how things go over the winter months.
My adrenal glands are not working at the moment due to the long-term steroids, and I am working with the endocrinologists to see if I can very slowly wean off them. If not, it will be steroids for life…..Emotionally I am keen to get off them as both my parents had significant spinal bone loss due to long-term steroids, and my dad had a neck fracture and paralysis because of it. (He also had ABPA and chronic asthma). But I try to be realistic. I am also pre-diabetic because of the steroids. So far, I have not had any side effects of note from the itraconazole and omalizumab.
My “case” seems so mild and ordinary compared to many that I read on the website or hear about on the Facebook group, but I expect there are plenty who also have a similar story to mine, so I thought it was worth sharing.
So how am I doing now? I still ride my bike (I did 33 miles recently), and walk (10 miles recently!), but I am slow on hills, and have an electric bike for when the going is tough or I am less well. My sats still drop with exercise, but not as much as before. If I have a physically busy day one day, I find I am more fatigued the next. My chest feels a bit tight at times but I am not coughing. My head always feels like I am about to come down with a cold, but the cold doesn’t come, but I have no idea why this is or if it is related in any way to the ABPA or the medication. I get mentally tired easily, especially in the evenings. I have had to stop driving on long car journeys on my own unless I do them first thing in the mornings. I felt my concentration was not good enough. So I go by train, or drag my husband along to share the driving, or set off early in the morning! I have learnt to slow down a bit, and have taken up trying to draw and paint so I have activities that are not physically demanding, as well as cycling, walking, gardening (with mask!) and playing with the grandchildren, and helping out at church.
I am lucky to have a good respiratory team that understand ABPA at the local teaching hospital, and for being in the UK where I have the NHS to fund my treatment. I am so thankful for that.