ABPA from Linda

[Pasquina]

I have allergic pulmonary bronchiectasis aspergillus, I have what is described as stage two aspergillus it has not yet developed into full blown aspergillosis, as things stand at the moment I have bronchiectasis and they are trying to hit the aspergillus with the high dose of steroids for 2 weeks I am told that if its controlled great, if not anti fungal meds will be next. I have just been given incruse and relvar types of inhalers and mucodyne to thin mucus. I would love to hear from others as to how they cope with this.

[sassy59]

Hope you get some replies soon Pasquina and wish you well with all the treatment. Pete is meant to try Mucodyne at some point but l have no idea if it will work. I hope so. Xxxxx

[Pasquina in reply to sassy59]

I have only just started Mucodyne so no idea if it works, but a fellow sufferer has mentioned a vibrating vest which might be cworth looking at, xx

[tbeth]

I also have ABPA and bronchiectasis. I’ve tapered down to 20mg of prednisone one day and 10mg the next. I’ve been on this dose for about 6mos. In addition, I nebulize hypertonic saline and albuterol and use a vibrating vest. I use a Dulera inhaler and was on the antifungal/Voriconazole. I haven’t had an acute exacerbation since Spring. I hope things go well for you with your new medications.

Beth

[Pasquina in reply to tbeth]

So nice to hear from you Beth, its very comforting knowing you're not alone. I was interested in hearing about a vibrating vest, had never heard that, I am on the list for a physio tutorial. If the 30 mg of steroids don't work they will put me on the antifungal. There is so much information on the web it can be confusing, so its great to hear from a follow sufferer.

[tbeth in reply to Pasquina]

Pasquina,

This is the link to the company that supplied my vest: smartvest.com

My doctor recommended the vest and my insurance paid for it after the doctor completed the prescription forms. There are other companies that manufacture this type of vest too. Let me know if you have any questions.

[veg58]

Hi,

I too have bronchiectasis and allergic pulmonary aspergillosis. Originally I was on steroids but it did not reduce the allergy marker sufficiently (called IGE) so they put me on an antifungal drug called Itraconazole. I have been on this for about a year. It seems to be working well and I am not sure if I am imagining it but my infection frequency has dropped. If they decide to put you on this drug, ask them to give you the brand that can be taken with or without food (called Losanoc). The older versions need to be taken with a full meal and they interact with antacid and other acid suppressing medications. I had found that a pain as I also take a medication to suppress stomach acid. With the new one it has been great!

Hope all goes well for you!

[Pasquina in reply to veg58]

Thank you so much for your info, I shall remember that, very encouraging, be well........

[Pasquina in reply to veg58]

Thank you so much, it's very helpful to know how others are controlling this.....I read an article on a drug called Omalizumab which sounds encouraging, patients were taken from French Hospitals excluding those with cystic fibrosis, the end result of the years follow up showed lower IGE levels and less exacerbations than using Intraconazole. I haven't had the chance to discuss this with my consultant as My next appointment is November 2017. If any sufferers have any more information on this drug I would love to hear it.