Hi all, I'm new on here. I have ABPA and don't know anyone else that has this. Does anyone else on here have it?

[owensmam3]

Hi all, I'm new on here. I have ABPA and don't know anyone else that has this. Does anyone else on here have it?

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Sorry I don't have what u do, but still wanted to say hi and welcome xx sonia xx

[Modola]

Hi owensmam3 and welcome,

I hope you are being looked after well since diagnosis?

I was diagnosed last year with abpa, bronchiectasis and told I was a carrier for alpha-1 antitrypsin deficiency - back from consultants today and still on 5mg predisolone, anti fungal and preventative meds for the predisolone.

All the very best

[owensmam3 in reply to Modola]

This is the thing Modola, I haven't been prescribed antifungal as my Consultant said don't need it, but everyone else I've seen written about it has been prescribed them. I'm on same as you except for antifungal.

[Modola in reply to owensmam3]

Hello owensmam3,

Strange that you haven't got asthma but you have abpa - as for the antifungals i wasn't put onto them straight away it was purely predisolone 30mg to start with but then on my next couple of visits to my consultant I still wasn't feeling well then the antifungals were introduced. Is that any help at all?

All the very best

[megannell]

" Hello ..owensmam....and a big warm welcome to you....I dont have that condition that you have..."i am sorry that you do though"..ABPA..But!.. you will get some very positive advise from others that do in this big and ever growing family of ours in HU...And dont be afraid to ask any questions...And try to keep yourself positive...Megan."

[owensmam3]

Thanks Megan, I just wish I could speak with somebody else who has this so we can compare and see if there is anything I should be doing to help myself. It's so difficult when nobody else has had it that I know so can't talk to anyone about it! I'm fine though and hope you are too.

[owensmam3]

Well 5/6 years treatment shows it can be contained I suppose. I see you also take anti-fungals, why won't my Consultant give me these? It's such an annoying thing to think it could help me further, but he seems insistent I don't get them. The asthma thing is confusing too. I didn't suffer with asthma, yet this disease supposed to stem from it! So confusing all round. Thanks for reply.

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Heard of it but info here aaaai.org/conditions-and-tr...

Be Well

[Booklover59]

Hi I am new here too. I have Asthma and ABPA and am taking Anti fungal meds. I have read a bit about ABPA. I have found information on a couple of websites.

[owensmam3 in reply to Booklover59]

Did you always have asthma DP, or was it a recent diagnosis. When I first started coughing up stuff, I had the tests for asthma but first they said no, then said yes, but my GP wasn't convinced either as I hadn't any symptoms of asthma before the ABPA took hold. My sister and son have asthma so I was well used to the symptoms. Anyway, I see you are on antifungal meds too. Don't understand why I am not!!! Thanks for reply though.

[Modola in reply to owensmam3]

Hi owensmam3,

Just a thought but do you suffer with your sinuses at all?

[owensmam3 in reply to Modola]

Yes I do Modola, but they have given me a spray Nasonex.

[Modola in reply to owensmam3]

Hello again,

I have suffered with chronic rhino sinusitus since my teens and last year had surgey performed on them - now on Avamys nasal spray to keep what is never going to be a normal nose in check - the only reason why I say this is that your sinuses won't help your chest situation as you most probably know - have they checked for nasal polyps?

[owensmam3 in reply to Modola]

I also had an op on my sinuses years ago as they kept getting infected and blocking. I'm wondering now if the ABPA was originally in the sinus before moving to the lungs.....I was never tested for it at the time. No nasal polyps, just narrow cavity on one side.

[Modola in reply to owensmam3]

I know you can have aspergillosis in the sinuses so that might be the cause as you haven't got asthma - so many reasons it all becomes very confusing, I never had asthma until 5 years ago - and now it has just spiralled

[owensmam3 in reply to Modola]

It's just awful isn't it, I asked my consultant why me? He said just unlucky...It all happened once I retired from work, the irony....not smoking and drinking, walking every day, eating healthily - all for this!!! Ah well, could be worse I suppose... Hope you are managing it ok and have support.

[Modola in reply to owensmam3]

I asked the same question - its in your genes was the reply - i'm 44 never smoked and not a drinker and I can't now even though it can drive you to it just worry for the future and what's next but it could be an awful lot worse as you say. Just have to roll with it

[owensmam3 in reply to Modola]

OMG you're only 44, that's not fair. At least I hope you feel better on your meds. I'm better than I was but not as good as I was hoping to be!! Taking meds for high blood pressure (something else I didn't have before this and I'm sure is caused by it) doesn't help either. Do you get bruising?

[Modola in reply to owensmam3]

Like you I thought I would feel alot better, the anti fungals help immensely but I do get tired, I don't get bruising but I do get acne flare up's - your blood pressure might be the stress of it all, I have high cholesterol now although I am pretty much vegetarian and I never had it prior!

[owensmam3]

thanks Flib, tried that and they told me to discuss with my Consultant!!! Can't win lol.

[owensmam3]

When you say "dormant" do you mean you don't cough up stuff any more then?

[Rosie701947]

Hello, this is my very first post here, I have ABPA, very difficult to understand condition. I am unwell with an attack at the moment. GP referring me to respiratory doctor to help manage condition. I have never taken anti fungal mediation. I am getting panic attacks as well. Any tips?