I’m a 60 year old gal, diagnosed with asthma since age 2 and ABPA since age 45. I’m pretty sure the ABPA dates back to age 30, though, because that’s when I started having recurrent atelectasis, once or twice a year. Usually I could clear it by myself, with some PT/chest percussion, but every few years I’d get a tenacious plug and have to go for a bronchoscopy.
I had severe asthma as a child, and at age 14 I came close to leaving this world – that attack resulted in a tracheostomy and bi-lateral pneumothorax, scars that remind myself that things can go south in a hurry. I improved with age, but was still hospitalized once every few years with asthma .
Then, when I turned 40, I began fifteen absolutely asthma and trouble-free years. I used my asthma control inhalers and nothing else but a multivitamin. I took up running, biking, and even did a few short triathlons. I had been thriving in my new home in the U.S. Pacific Northwest, but then, in 2005, I ran in to the “perfect storm” of lung disease. I contracted pertussis (yes, whooping cough at my age!); got overexposed to mold at a remote fishing camp, which flared my ABPA; then somehow contracted an atypical mycobacterial infection (m. abscessus). On top of that, I gave myself a hiatal hernia while coughing my brains out with pertussis, which apparently gave me GERD. I would come down with some sort of pneumonia every 60-90 days, although in between I felt almost normal except for a severe, annoying cough. My pulmonologist believed Sporanox would help the ABPA, but after 9 months on 200 – 400mg doses with no results, we gave it up. It took three years of seeking experts, and a few consultations at the National Jewish lung clinic in Denver, but now I’m back to baseline and biking, hiking, and skiing again. My pulmonary function test results are stable, but low for my age, and I’ll always be under treatment.
I did 4 months of IV antibiotics and 10 months of oral antibiotics for the mycobacterial infection, which luckily has not recurred. However, my IGE levels reached the 1300 range with the ABPA flare. My local allergist, as well as the docs at National Jewish, recommended trying Xolair for the ABPA/asthma combination. I started it in late 2007, when my IGE was again low enough for me to qualify, and I’ve been on the maximum dose (375mg once every two weeks) since then. I’ve only had to have 1 prednisone burst since, and I’m back to my normal healthy self. I still cough stuff up most every day (I guess this part is a life sentence), but it’s minimal and easy to live with compared with that hellish three years.
Because I was treated with the IV antibiotics and the Xolair at the same time, nobody is sure if my main problem during that three years was ABPA or the mycobacterial infection. In spring of 2011, my local allergist agreed to try backing off the Xolair, decreasing it to 375 mg every four weeks. Guess we proved something, because after 6 weeks, I started coughing up yellow junk and ended up with a severe case of atelectasis that eventually necessitated a bronchoscopy. Oddly enough, though, the pathology from the bronch came back negative for everything, including aspergillus.
I’ve experienced no side effects from the Xolair at all, except for a lighter wallet. It is quite expensive – for my dosage, the drug alone costs $45,000 USD /year and my allergist charges each time for the administration. I have good insurance, thankfully, but I still end up paying $4000 USD/year out-of-pocket.
In any case, I feel great for now, and I love my outdoors-oriented life. I’m really grateful to medical science for all of the advances over the years – the combined steroid/LABA asthma control inhalers made a huge difference for me, and the high-tech recombinant DNA drug (Xolair) is nothing short of miraculous.