Hi! I'm new on this website. First of all, I'd like so say sorry for my English because I'm Italian and I'm sure I'm going to make a lot of mistakes.
I need help because my boyfriend (only 27years old) was diagnosed with ABPA last month. It took almost one year to have this diagnosis, nobody was able to say us what was happening. I'm a medical student and I'm getting very anxious about that, also because nobody (doctors) knows ABPA very well in Italy.
He has asthma since he was 14, but he has never had problems with it (NEVER) and he has never taken any medications for it. He also has sinusitis with polyps.
Last year he went in hospital twice for asthma attack and bronchitis, breathless and cough with mucus.
After one year he was diagnosed with ABPA because:
-cough with mucus
-breathless
-IgE Aspergillus leves high (blood test)
-IgG Aspergillus leves high (blood test)
but NO BRONCHIECTASIS, CT NEGATIVE, TOTAL IGE ONLY 200.
well, I have two questions for you and I really hope someone will answer.
1. is it possible to have ABPA without having bronchiectasis?
2. now he is pretty good ( taking prednisone and inhalers) but he has stopped doing sport and travel. we are so young and I'm worried about our future. will he be able to do everything? we have a lot of projects: work, travel a lot, do sport together etc..
thanks for reading
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Italian-girl
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Hello Italian-girl. Your English is great by the way. I have ABPA.
To answer:
1. Apparently about 5% of asthmatics develop it, without having bronchiectasis. I have both, but the asthma came first.
2. Once his blood levels return to normal, your boyfriend should be fine. I had about 5 years "in remission" from it but unfortunately it became a problem again recently and I'm now back on anti-fungals, but they're working well & after only 3 months my blood levels are almost back to normal. The usual treatment here in the UK is 3-6 months on anti-fungals (eg itraconazole) together with a low dose of prednisone.
I think your boyfriend should try and start exercising again if possible. You don't say what treatment he is having for his asthma but ABPA dramatically worsens asthma so maybe it isn't sufficient to control his symptoms?
This is an excellent source of information for people with ABPA aspergillus.org.uk/ Don't read about other aspergillus problems eg invasive aspergillosis because (1) it's irrelevant to your boyfriend and (2) it's more worrying than ABPA (which, as you probably know, is the mildest form of aspergillosis). Unless he has lung cavities from, for example, previous tuberculosis or similar, he is at no risk of the invasive form of aspergillus. Please note I have no medical training and am just a reasonably well-informed patient!
The Fungal Infection Trust has a forum on HU, if you browse you'll see. I'm signed up to that but don't find the members very helpful, but it is administered by two medics from the Aspergillus Website so if you post a question you might be lucky and get some very expert advice!
I too just got diagnosed with ABPA but with mild bronchiectasis - I’m older though (37) and my levels were all much more elevated, igE was 1132 overall and they found a very high percentage of eosinophils 33% on the bronchoscopy BAL. I have a feeling I’ve had this for a much longer time and wish someone had caught it earlier, but I do think chances of improvement and long term prognosis are much better when this process is caught early. I live in America where there is also not a huge understanding of ABPA but I’ve seen many specialists who think biologics are the way to go. I don’t know if you have these in Italy, the older one is Xolair and some of the newer ones are Nucala and Fesenra. I would inquire about these drugs for your boyfriend as I think they will be more of a long term fix! I am a nurse practitioner by the way, so I know it’s hard when you’re in medicine and realizing there is not a lot of knowledge out there about a specific disease! Good luck!!!
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