Broncho-pulmonary aspergillosis

Just wondering if anyone on here has this condition?

I was diagnosed twenty years ago and since then have been fairly stable- continuing to work full time and even coming off prednisolone last year (been on it for twenty years more or less). However last year I was treated for breast cancer and the chemo gave me some nasty chest infections. Since then i haven't really felt well- my lung functions tests have gone up the spout and I'm now back on 20mgs prednisolone, as well as serevent and flixotide inhalers and now singulair at night. I'm also taking an anti-histamine because I have had hay fever more severely than ever this year.

I am still working full time but finding it hard going, and have had quite alot of time off recently- although since taking the increased medication I am starting to feel better.

I would be interested to find out if there are many people with aspergillosis on this web-site and what their experiences might be.

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Unfortunately yes, diagnosed last year and still have no control of it or my asthma. Taking antifungals for it plus daily pred... To be honest still finding my feet with regards to this disease and what to avoid... will get there eventually though it has been a steep learning curve...

Have you had a sputum sample taken recently as this may show if the Aspergilosis is active or another bug... Also are you on antifungals? If so which one... Hope you are on the mend soon...

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Hi Malawi2

Thanks for your reply and sorry to hear of your experience but hope I can offer you some support!

Over the years I haven't had to give many sputum samples, as the 'activity' of the ABPA tends to be monitored through blood tests and show raised IgEs (immunoglobulin E). Sputum will only show infections, and as I have brochiectstasis as well I seem to always have a chest infection anyway!

I'm not on anti-fungals yet as my consultant wants to see how I do back on the prednisolone first, I have never taken anti-fungals but know they could be prescribed at some time.

I have still not been able to identify the triggers- although I avoid dairy products as they make my cough worse, and obviously dust etc. As aspergillus is a universal fungus it is impossible to avoid it anyway. I think it has been a matter of management more than anything else.

I do remember that when I was first diagnosed it was a difficult time, but I took the advice offered and never forgot my meds! Twenty years later I am still here and holding down a full-time job (just!)

I would give the treatment time to settle and try not to worry- I have found walking, swimming, yoga and relaxation exercises invaluable over the years as well as a varied diet and a positive outlook so good luck and get well soon!

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I have had numeous total IgE tests done over the last three years originally due to a long list of other allergies but now having the test every three months because of the Aspergillosis (recently being seen by new consultant at another hospital so going back to basics to make sure everything covered). The penny only dropped with my old respiratory consultant when I said I had high IgE levels both times I had allergy testing done along with other symptoms...

Unfortunately recently found out now allergic to four moulds, previously it was only aspergillus and alternaria so judging from what new consultant said will probably be on an antifungal of one sort or another for life... was hoping it was going to be a short term measure.... Awaiting to hear about a couple of research trials one for xolair and one for antifungals so hoping these may help eventually with the control issues...

I have struggled with work and like you had lots of time off sick and at least now aware of multiple triggers none of which can be 100% avoided. Have to be very selective about what work I can do...

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Hi Loobyloo222

Please could you change your settings for private messaging so that I can respond to your message...

Thanks

Malawi2

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Think I've done it- still getting the hang of how to use this site- finding it very confusing!