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ABPA forever?

britney profile image
15 Replies

I was curently diagnoses with ABPA through blood tests.. started taking Itraconazole and Prednisolone. Is this forever? I'm only 40 yrs old, used to be very active, planned one more child..Now I feel like my life is over. Can't do this, can't do that... even the meds making me so ill..

Will i be on meds forever? Is that it?

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britney profile image
britney
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15 Replies
Minushabens profile image
Minushabens

This is a similar query to the message I put on here a couple of days ago. I've been told by a consultant that whilst some people are on itraconazole forever, that isn't ideal & they like to give people a break from it if they can. I don't know what the test is though. As far as ABPA is concerned, I'm also relatively new to it. I've had asthma for over 50 years but was only diagnosed with this about 2.5 years ago, so I don't really know what the long-term treatment looks like, albeit I've been wondering a lot lately.

britney profile image
britney in reply toMinushabens

Hi. I'm normally very active,walking about 6-8 miles per day..socialising.. was told to slow down, relax. I was planing to have a child, was told not too as can not on the meds. No alcohol- even a glass of a wine per a week..I never had asthma either before so I don't get how I got this condition without a previous history of severe damage of immunity. I had it diagnosed by blood tests- where I had high levels of of aspergillus fumigatus igE and igM etc..after had a chesty phlegmy coughing which would not go away for few months. Yes I feel really terrible..like my life is over at 40..

nikki5876 profile image
nikki5876

I too am 40 years old and was diagnosed October 2015, been on Itraconazole ever since with prednisolone every so often when I have a bad flare up, I tried coming off the Itraconazole about 3 months ago, but unfortunately it looks like I will be on them forever as with in a week I was bad again and needed steroids to bring me back to be stable. I take 200mg am and 200mg pm, the only side effect I feel I have is tiredness.

britney profile image
britney in reply tonikki5876

Thank you for reply..

Yes I'm on Prednisolone and Itraconazole too. Does it affects your lifestyle? I mean general? I'm still shocked.. what are the symptoms if flared up? All my symptoms were rattly cough which would not go away..and I couldn't never anything coughed up..so was literally chooking on thick bit of mucous...x

nikki5876 profile image
nikki5876 in reply tobritney

once I had been taking the Itraconazole for a few months my rattle cough and thick mucus cleared up considerably, I call it a flare up when I start with the thick mucus and the cough again, I have found this can be caused from being around a lot of greenery, bushes trees etc., I also have now been prescribed fexofenadine 180mg which is a antihistamine, and I also have bought some carbocisteine capsules which help to thin the mucus making it easier to cough up. I find the only impact on my life if the tiredness, but suppose that could be my age :-) and obviously not able to do a lot of exercise although this seems to be getting better as time goes on, the only thing I hate is the tiredness.

britney profile image
britney in reply tonikki5876

Thank you. Yes that's all ...the cough...and the mucous..pretty annoying.. Did you have before any condition like asthma as they say only severe immunity problems would cause this as people with healthy immune system just shake it off? I never had an Asthma before....In my life like say every 5-6 years I had episodes of these coughs like having now - lasted for few months but managed to shake it off..this time I did not.. Dr digged some old 14 yrs blood tests and it showed in already was sensitive to Aspergillus Fumigatus at that time but it went away on its own..Then again 5yrs ago the same cough but Aspergillus was negative..Now it's very high.. x

nikki5876 profile image
nikki5876 in reply tobritney

I was diagnosed with asthma when I was 11 years old (a long time ago ha ha ) but it was only ever on lots of exercise and only ever needed blue ventolin to relieve it, was only ever bad when I had a cold. then about 10-12 years ago it got where I was struggling to breathe literally all the time, then 6 years I was burning some garden waste, and ended up in hospital for 2 weeks with the worse asthma attack ever, I really thought I was going to die!!! after that my gp put me on new inhalers and said it was just my asthma getting worse was always prescribing steroids and antibiotics every month literally when I according to him had a chest infection. Then 2 years ago I self referred to Breathing Space, (Part of NHS) and explained all my symptoms to the chest specialist Dr Miles, who straight away did blood tests sent me for ct scan and diagnosed me with ABPA changed my inhalers, and started me on Itraconazole, since I have been on them I have been loads better than I was still not 100 percent but a lot better, I also have regular appointments with him (every 4 w44eks) and repeated blood tests and ct scans, which are showing that it is reducing.

Oscar12 profile image
Oscar12 in reply tonikki5876

Hi nikki 5876

I also see Jon Miles at Breathing Space.

nikki5876 profile image
nikki5876 in reply toOscar12

Amazing guy!!!

britney profile image
britney in reply tobritney

I did not have ashman but suffered from atopic eczema since being little...also had a various common allergies like pollen, dust, cats..But this never really bothered me as there were years when I had no problems at all.. I did not even know that ABPA exists! Also I read somewhere that there are probably much more people with undiagnosed ABPA as when they have an a bad flare up they just presume its just a bad asthma attack. X

Hi sorry you're feeling so low. I'm recently diagnosed too. I also have so many questions. I'm off on a motorcycle holiday today and have no idea if I'll be able to cope. I feel like the weakest link yet used to be the strongest re fitness and stamina. It's like I'm running on 'poundland' batteries. What have you been advised not to do? I've had to lay off cycling (but am using an exercise bike) work wise I get easily exhausted. So lots of rest stops needed. I'm waiting for an appointment to see a breathing /exercise physio. My main irritation is not knowing what makes a good day or bad. I've never had asthma so find it hard to judge the triggers. Hope you get some moral support. It's hard when even gp's have never heard of it. I'm not on anti fungals. It's a question I put here last week. I'm on week eight of twelve prednisolon. Then being tested to see if it's helped. (I don't think it has)..

I hope to read more answers when I get back. Take care..I know it's frightening. I'm in the same place. :-)

britney profile image
britney in reply to

I posted my answer above..

in reply tobritney

Sorry was reading answers out of sync.i have bad mobile reception. .They have only just loaded. :-) all sounds very similar to me..I'd say I too have been in shock..going from cycling 40 mikes a day to only managing low level exercise bike for five miles..exhausted. .burning lungs.and headaches from over exertion if I ignore signs. Does any one find the anti fungals more helpful than the steroids? I'm on mucoceistein three times a day.. This really helps with the coughing. No more 'slugs' or liquidised frogs ;-)

DrGraham profile image
DrGraham

This sounds a lot like ABPA or possible severe asthma with fungal sensitisation (SAFS). The National Aspergillosis Centre in Manchester specialise in the management of these infections - if concerned you can ask for a referral and your doctor can ring for assistance (nationalaspergillosiscentre....

Once managed (steroids are usually tried first but then antifungals) symptoms often stabilise and improve but it can be slow.

The steroids are there to help you breathe but high doses can have unpleasant side effects, the antifungals can help reduce steroid dose but clearly some people get additional benefit. These illnesses tend to calm down, then flare up, then calm down and so on. Steroids are for life, the antifungal will be used as needed (as they are also prone to promoting side effects)though some people need them all the time too. This is very much a case where close collaboration between patient & doctor is needed.

For support there are a thousand members in our Aspergillosis Communities, many with ABPA

nacpatients.org.uk/

nacpatients.org.uk/facebook...

britney profile image
britney

Thanks everyone for reply.. I'm on Itraconazole and Prednisolone and I noticed that my heart beat is slower then normal? Before I was on any meds my resting hearbeat was around 80 and now it is like 60 even 58! I'm only on Itraconazole 10 days and I actually thought that my heart bests so much faster as felt lots of palpitations, but I started checking my pulse and it's actually quite low.. is that normal? I read about brachyrdia and that made me worried. I never had a such low pulse, usually I have 80/90 per minute.. I just rechecked again..57. I know it is normal 60-90 but I never had 60 or less before so it is definitely slower..

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