Have any of you been diagnosed with aspergillosis?

[Sparkles70]

I was diagnosed back in November and prescribed anti fungal medication and steroid nebuliser. I had never heard of this ailment before and wondered if anyone else was a sufferer.

[Wheezycat]

I have certainly heard of it, but I am not too clear. A friend picked it up from back mould behind her wallpaper. After she changed her bedroom the condition has gone away and she has no further trouble. She was at that time diagnosed asthmatic, but it was not something she otherwise suffered from.

[Sparkles70 in reply to Wheezycat]

Ahh mine is where I am allergic to EVERYTHING even the leaves outside, I have to keep everything on doors really clean but it’s when I go to other peoples houses I can have an allergic reaction 😢

[Wheezycat in reply to Sparkles70]

I think it is a mould specific condition, something like an allergy?. Others on here are likely to know better.

[beech]

Do a search (box in top right hand corner of the page), there's been a recent thread about Aspergillosis in the British Lung Foundation forum.

[Sparkles70 in reply to beech]

Ahh thank you I will look. X

[Minushabens]

I was diagnosed with ABPA a few years ago. I’m taking 600mg of itraconazole daily at the moment plus asthma meds. There is a dedicated HU page to it, albeit it is very quiet. There is also a very good Facebook page for sufferers. Both of these are run by Dr Graham Atherton who is a leading UK specialist in aspergillosis. Let me know if you want me to point you in the direction of any of them.

[gandac in reply to Minushabens]

I was told I "probably didn't have aspergillosis". In facebook seach for Aspergillosis support (Private). They have some good information. I follow it still as they have info about breathing problems which I still suffer with.

[Sparkles70 in reply to gandac]

How can they say you probably don’t? Sometimes doctors outstand me!

I have had so many tests done when they told me I had it I had never heard of if it.

Sounded disgusting! I joined the group yesterday after a recommendation it has some great advice and tips on there.

[Sparkles70]

Thank you so much. It’s really good to have other people to speak to who know what I’m talking about. The Facebook page would be great any information would be greatly received.

[Minushabens in reply to Sparkles70]

As gandac says, if you search on FB for Aspergillosis Support (Private) you should easily find it; there's a public group as well, but I don't bother with that one; I think it's more aimed at carers.

The world of aspergillosis feels very esoteric to me - I always (more or less) understood asthma, but this largely baffles me as you get endless numbers thrown at you (IgE to this, that & the other) without anyone really explaining what they mean & whether or not you're getting better!

There are different types of it as well - ABPA, CPA, aspergilloma & others. I've had more than one doctor ask me what ABPA stands for, & even my GP, who is a young & clearly very intelligent guy, just tends to say that he'll leave it for the lung specialist to worry about.

In terms of HU, there is a page called the Fungal Infection Trust, which I think was set up by a national aspergillosis charity, but you're as likely to get messages about fungal nail infection on there so I don't think too many people bother much with it.

Good luck anyway & feel free to message me if you want me to send you anything via Facebook.

[Sparkles70 in reply to Minushabens]

Thank you, it is very confusing I know my asthma well and the medications what works what doesn’t so when I started to feel more unwell than usual with more frequent chest infections I knew something wasn’t quite right, fast forward a good hospital consultant and lots of tests and I was diagnosed with allergic aspergillosis it’s not even really explained to me I was just given medication and told to come back in a few weeks! So I’m just floundering and no one I knows knows what it is so I feel like an outsider looking in on my own life if you get what I mean? I’m sick and tired of being sick and tired. I’m currently on 40mg of steroids daily which I was on for a lung infection which does seem to help wth things, I have just finished another course of anti biotics for a chest infection and a different doctor told me I shouldn’t take anti biotics as it can make the mould grow??? To say I’m confused is an understatement hopefully I’ll get some info from the groups. Thanks again. Jo x

[Minushabens in reply to Sparkles70]

It is very complicated...in my case, I became aware around my late 40s that I seemed to be perpetually wheezy & as I turned 50 (about 4 years ago) I was getting in a very bad way. My GP referred me to the specialist & after a fair few tests I was given the ABPA diagnosis. It is an awful illness & I get really tired mentally & physically from it. It's worth trying to build up a lot of information though as knowing when to get antibiotics or other interventions, plus side-effects & so on is important.

Are you taking itraconazole or a different antifungal?

[Sparkles70]

I’m 46 now been asthmatic since I was 10, but the last 2 years my asthma has really played up and I’ve felt generally unwell and tired I have sleep apnea as well I use a CPAP machine the joy! not!

Currently on itraconazole and 40mg prednisone.

I suffer with really bad allergies and take 140mg fenofexadine and dymista spray along with asthma meds of spiriva and seretide 500. There putting me on steroid nebuliser twice daily.

I have what seems like a permanent chest infection and wheeze, I have little or no energy everyday is a struggle!

It’s so nice speaking with someone who understands the daily living with it I’m sure my friends think I’m a hypochondriac!

[Minushabens in reply to Sparkles70]

People tend not to understand...I've put on loads of weight for example with the steroids & other meds I take, & I think most people think I'm just overdoing the beer, chocolate & pies. I mean, I am, obviously, but I reckon that only accounts for a percentage of the weight gain, plus I'm just too knackered to exercise it off. Just normal day-to-day things are hard as well, like getting up flights of stairs. I've managed to keep on working but am having serious thoughts about if I just need to give up.

[Sparkles70 in reply to Minushabens]

Oh the weight gain is awful the steroids make me hungry and with having arthritis trying to exercise I something I really struggle with people just assume I’m lazy!!

But I’m just so tired and it hurts!

I can’t do stairs and I can’t go out if it’s damp as I have a flare up.

People say to me well you can’t be I’ll you look ok!!! 🙄

I’ve given up my job and now work from home for my husbands building company doing the admin which I do when I’m having a good day 😑

[Minushabens in reply to Sparkles70]

I've been working as a Primary School teacher for the last couple or so years & although I generally manage OK in the classroom, I have really struggled with things like PE lessons & the general classroom management side of things (displays & such like). I'm leaving the classroom to do some 1:1 work with excluded kids so I'm hoping that might be a bit less strenuous...unless they have a mouldy house that's full of cats anyway.

[Sparkles70 in reply to Minushabens]

Mouldy house full of cats 😂😂

[Jacmidlands]

You are not alone Sparkles70! I have ABPA and bronchiectasis. The Facebook group (private one) is very good and I also read the public one too. I was very down in the dumps when I was first diagnosed but you do learn to live with it. It's an allergy so can't be 'cured' but can be managed. On the group there are lots of people with CPA and other variants but ABPA is considered the least worst. There is a world renowned centre of excellence for Aspergillosis in Manchester and they have a great website. Search 'National Aspergillosis Centre, Manchester' and that will give you lots of information. There is a staggering lack of knowledge in the medical fraternity about ABPA since it is uncommon. I am my GPs only patient who has it. Luckily I have a good respiratory consultant locally and also attend the Brompton in London. Good luck!

[Sparkles70]

Aww thank you it’s good to know I’m not on my own not that I want anyone else to have it! I went to the Brompton earlier in the year they are great there.

Thank you for the info it is really appreciated 🤗🤗

[strongmouse]

I am not an expert in this but had a test which found that I was allergic to aspergillosis several years ago. So gardening can be difficult and as you point out mould in the house can trigger symptoms. As I understand it some people go onto develop and aspergillosis infection or mould ball which causes huge problems. A friend of mine did and was on tow lots of medications to get rid of it - his asthma had worsened a lot and his peak flow was right down.

Currently I just try to avoid mould - hard to do - and take a daily antihistamine. At home I use air filters in the bedroom and main rooms which I use and that seems to help.

Just an after thought but does anyone know if it effects sleep in anyway?

[Sparkles70 in reply to strongmouse]

I am on 180mg fenofaxidine anti histamine daily and have an air purifier in my bedroom helps a bit just really aggravates my asthma.