ABPA

Hello - I'd like to talk to other members who have been diagnosed with ABPA? Thank you. Rosalind

[sumpy]

Hello pleased to meet you.

[Hidden in reply to sumpy]

Hello - pleased to meet you too 😊 Do you also have ABPA? R

[sumpy in reply to Hidden]

Yes diagonised a few years ago

Poked prodded scanned aradiated? Amd now rattling away with itraconazole

Are you newly diagonised then?

[Hidden in reply to sumpy]

Yes, just diagnosed over a week ago but been ill in and off for years. Glad to have a diagnosis but so much to learn. 😳

[GAtherton Administrator Fungal Infection Trust]

Also try our social groups on Facebook and Yahoo - see facebook.com/groups/aspergi... and uk.groups.yahoo.com/neo/gro...

[Modola]

Hello,

I was diagnosed with abpa just over a year ago - how are you getting on?

[Hidden in reply to Modola]

Hi Modola - thank you for your reply. To be honest I'd never heard of this condition before so I'm just trying to find out as much as I can. I've been pretty poorly on and off for a good number of years with chest infections. Then I started to get quite frequent pneumonia and admitted to hospital. I am relieved that a cause has at last been found but pretty gutted too. What about you? How are you coping? Are you well just now? Are you on prescribed treatment? Best, Roz

[Modola in reply to Hidden]

Hello Roz,

I know exactly where you are coming from - I was diagnosed with asthma about 6 years ago but never felt quite right after. Last year it really went crazy - like you chest infections feeling incredibly ill and pains in my lungs (the right side) coughing up blood and long green/brown plugs (sorry if thats too much info) - x-rays weren't looking good either. Refered to the hospital and at first they said it was Bronchiectasis but after a CT scan ABPA was also diagnosed plus I am now a carrier for Alpha-antitrypsin deficiency!!

I am on prednisolone, Itraconazole and all subsequent preventative side effect measures - I feel ok but never great my sinuses cause me more problems than my chest but they all seem to have an effect on each other.

How are you keeping?

Best wishes always

[Hidden in reply to Modola]

Hi Modola - that all sounds pretty heavy duty and hope you manage to get all under control. At present I am still on my asthma inhalers + Spiriva. I've been given a prescription to start long term Prednisolone but haven't yet started. I've seen a herbalist and I'm on various things, went totally sugar free about 3 months ago and have now cut out dairy. Using a mask in dusty or damp environments and taking precautions in house around dust, smoke etc. Want to try all of this and use Prednisolone on an as needed basis for a wee while. It's all a bit overwhelming at the moment but I'm monitoring it all. Hope you keep well. Roz

[Modola in reply to Hidden]

Hi Roz,

I tried cutting dairy etc and mostly use only soya milk etc it helps a little but not greatly. When I was first diagnosed I asked the consultant about what would happen if I didn't take the meds and she replied that it would become untreatable in the future if I didn't - so I know its rather scary with side effects etc but it might be the best option - my bronchiectasis is due to the ABPA causing the damage in the first place so my right lobe is permanently scarred

I am now down to 5mg Pred from a starting point of 30mg this time last year.

It is overwhelming and very scary and to be honest it does get me down at times - it does help to know that other people are going through it (not that I wish it upon anyone) - people look at you blankly when you say what you have.

Wishing you well

[fcag2001 in reply to Hidden]

Hi Roz.

Sounds like the same type of journey as I have had for the last 5 years. I nebulise with saline and salbutamol twice or three times daily it helps relieve mucous. Hospital in Glasgow prescribed this after serious bouts of pneumonia. Now- as a result of visit to excellent Manchester Hospital and diagnosed with ABPA- taking itraconazole with very few adverse side effects .Does not stop me getting pneumonia/ respiratory infections but am able to combat them better. Energy getting stronger. trying to get out for a daily walk or swim especially when in the sunshine abroad. Sunshine makes a huge difference to my well being. No problem with insurance just a bit expensive but being in the sun does make my chest feel so much better.

I was initially also upset at diagnosis but am learning how to cope and after a full year on itraconazole feeling a bit better. I take antibiotic for two weeks as soon as I get a chest infection. GP very good and says to come and see her as soon as I feel an infection starting. Helps to have a supportive GP.

If you can get some respiratory physio it also helps to relieve the breathing. GP can refer you via consultant for this.

I was suggested to go on a salicylate [aspirin derivative] free diet. bits of it help.

Hope this is helpful

Good luck, stay strong and don't let it get you down.

[Hidden in reply to fcag2001]

Sounds very similar - emailed you at address given. Be good to catch up. R😊

[fcag2001 in reply to Hidden]

Where do you live? I can do a meeting in Edinburgh or Glasgow. have to get cataracts done Sept 8th .this is a result of being on steroids and voriconazole for 6 months prior to seeing Manchester Prof denning Unit.

A real pain as two previously my optician said my eyes were great and no cataracts but then voriconazole and mega steroids given and ho hum cataracts in both eyes but I will get them sorted and then back in the swing.

Let me know if you are local?

Have not yet received your email at [e-mail]

look forward to it.

Frances

[Hidden in reply to fcag2001]

Hi Frances - perhaps it has gone to spam? This often happens. Email is [e-mail]

I will resend. I am in Edinburgh but can meet you wherever suits you best. What a shame about your cataracts. Hope this is dealt with soon. I'm very much looking forward to meeting. I am also in Facebook. Best, Roz

[fcag2001 in reply to Hidden]

[e-mail]

Dr Graham Atherton is administrator for UK

[e-mail]

Scottish group patient lead.

try and see if you can join this group.

[Hidden in reply to fcag2001]

Hi - I have joined the UK group. Did you get my second email? If not, will try with my other email address. 😊

[Minushabens]

Another one here...no formal diagnosis as such but a descriptive diagnosis which I think is ABPA...they tell me I have a severe aspergillus allergy & am taking itraconazole for it. I'm been on it almost a year now & have started to see some improvement so good luck

[Hidden in reply to Minushabens]

Hello - nice to meet you. Are you on Prednisolone as well as itraconzole? Glad you are starting to feel better. R😊

[Minushabens in reply to Hidden]

I'm not currently on prednisolone but have been many times. In terms of my lungs it's a bit of a mix of ABPA, asthma & possibly bronchiectasis so I tend to get the steroids when one of those things flares up my asthma.

Nice to make your acquaintance anyway & even if we can't solve the problem you'll find plenty of people around here who know just how you feel!

[Hidden in reply to Minushabens]

Nice to meet you too and it's good to have people around who know what you are going through. R😊

[sunflowergrami]

I have confirmed ABPA as well, with allergic sinusitis as a contributing factor. Just finished my 2nd 4 month course of itraconazole 600 mg daily and prednisone tapering from 60 mg daily. Last summer was on the itra at 400 mg daily and pred taper; had bronchoscopy during winter. Scarring in lungs. High prednisone caused rapid cataract growth and just had cataract removal in one eye yesterday. Frustrated as this condition seems to recur. I discovered that there are at least 3 other patients in a 50 mile radius with ABPA. Was diagnosed winter 2013. Have had adult onset asthma with frequent flares.

[Modola in reply to sunflowergrami]

Hi,

I have terrible trouble with allergic rhinosinusitus - I had sinus (FESS) surgery last year which has helped greatly but it does flare up and knocks me out for a day at least with sickness and pain - I have had it since my late teens - miserable!!

[sunflowergrami]

I have had FESS twice as well.....