ABPA meds

Hi I'm newly diagnosed with ABPA but have had it for over two years.

I'm on three months of steroids relvar elipta, inhaler, mycoceisteine plus vit D supplements. (Been seven weeks now). I'm still feeling exhausted all the time with burning lungs.

Reading these posts everyone seems to be on different meds. Can any one tell me how long before I can start to feel normal again. .? I used to have a relatively active life style..

[Modola]

Hello RaineM,

Sorry to hear that you aren't feeling so great at the mo - I was diagnosed with ABPA about three years ago started off on 30mg of Prednisolone, Omeprazole, Adacal D2 (Vit D sup), Montelukast, after about 2 months of the original diagnosis I still wasn't feeling that great so my consultant introduced Itraconazole (antifungal) which she said would happen if the steroid by itself didn't do the trick, since then things have improved lung wise - side effects are always a problem with drugs but the alternative is a lot worse!!

I hope this is of some help to you, wishing you well

[Hidden in reply to Modola]

Hi thank you for your reply. One of the things confusing me has been whether or not I should have anti fungals. My GP doesn't have a clue..and hospital doc, although very god getting diagnosis very quickly doesn't really have time (understandably) to talk me through it all. So feeling a bit lost in the dark. Trying to educate myself to get fit again but not really knowing what to do. Thank you. Hope you're feeling well.

[Hidden in reply to Hidden]

Whoops...should have said good not god..

[DrGraham in reply to Hidden]

Antifungal meds are useful to reduce the dose of steroid. They do not cure the Aspergillus infection but do help to keep it in check. Some people will be given and antifungal for a limited time until they feel better, then it may stop until you start to feel unwell again - good partnership with your doctor is important.

[Hidden in reply to DrGraham]

Thank you for your reply. The hospital doctor has been really good at getting my diagnosis but his knowledge in answering my questions conflicts with what I have read on the Manchester site..which leaves me very confused and a little worried .I'm not criticising. Just making sure I understand everything my gp made loads of mistakes. .so I'm a bit paranoid..I really need to get healthy again. Thank you.

[Modola]

Hi,

Did you have a CT scan to confirm that you had ABPA and bloods? My GP wasn't aware of it either!

[Hidden]

Hi yes, ct scan, broncoscopy, wash out bloods the whole lot. After two years of errors from GP. Came as a bit of a shock. Still trying to get my head around it all.i went from being able to cycle 40 miles a day to collapsing after 15 mins at a low key keep fit group. Also collapsing at work. I've never had asthma. .I don't fit any usual criteria for this..hence my confusion etc. The biggest thing I notice from reading these blogs is that a lot of people are on anti fungals. After GP and consultants initially getting things wrong. .I'm paranoid about everything being right now..no idea why I have this I suppose my body is just being useless..

[DrGraham in reply to Hidden]

See my reply above on antifungals - they are given in addition to steroids if needed. It sounds like you have ABPA - this does not always go with asthma, you are not unusual. More information written by the Fungal infection Trust here nacpatients.org.uk/abpa

[Oscar12]

I would ask your Dr/ Specialist? If you need Antifungal meds.

[Hidden in reply to Oscar12]

Yes...just wanted to see what others are on before I give an onslaught of questions. The consultations are so short I feel I need to learn as much as possible first..

[Minushabens]

Hi

I was diagnosed about 30 months ago through CT (to assess for bronchiectasis primarily), blood tests, etc. I went onto itraconazole around Feb. 2015, & the consultant changed my asthma meds. as well.

I'd say it was 6 months or so before I really felt better & all this time later I'm not out of the woods with it.

Hope that helps a bit

[Hidden]

Hi sorry to hear you're still feeling unwell. Thank you for your reply. Did changing drugs make any difference at all? Have you (or anyone else on here) been offered an exercise plan to improve fitness? I find over exersion causes my lungs to burn and my head to spin..I'm waiting for some 'rehap' but using exercise bike whilst I wait.

I know I'm being impatient. .

Thank you

[Minushabens in reply to Hidden]

I have never been offered any sort of advice on rehab, exercise, etc., but I looked up a bit myself. I feel much, much better than I did when I started, but unfortunately, it can be a long haul.

The change of inhaler probably did help although it's hard to pin down what's what. My consultant felt that my original asthma inhaler (seretide) increased my propensity to infection, hence the change.

[Modola]

The only thing that i have been told by my consultant is too keep the lungs as dry as possible - brisk walking and gym, if that's any help.

Have you got a cough at all? Itraconazole has helped me no end - strange that you aren't asthmatic although i know it can occur without. Have they prescribed an inhaler for?

Wishing you well

[DrGraham in reply to Modola]

Exercise is importnat to maintain lung function - try to do more than 15 mins per day. You will find lots of support over at the Aspergillosis Communities on Facebook nacpatients.org.uk/facebook...

[Hidden in reply to DrGraham]

Can '0ver doing' exercise damage lungs further? i go on an exercise bike for 45-60 mins per day..if my heart rate exceeds 140 it feels like my lungs are being strangled..i want to push myself but am worried about 'damage' I'm not able to use 'real' bike yet..as worried about making my self worse.

I have neutropenia and ABPA - can this turn to invasive if i over do it?

Thankyou

[Pooeysuey]

You can ask your GP to refer you to the National Aspergillosis Centre in Manchester and once they have been in touch you can communicate with them on line, phone etc.