Iam 42 yrs old and I was diagnosed with ABPA in April as had a non productive rattly cough for months.
Had a CT scan showing huge mucous plugs and mild bronchiactes. Only taking prednisolone and have an Fostair inhaler.
Now my chest feels like a cat sitting a purring inside me- very noisy and rattly. I was given Carbocisteine syrup on my own request as i feel the phlegm inside but it seems doing absolutely nothing- taking 750mg per day for 6 weeks now.
Im so desperately to get it out..Dr just says drink water etc..inhale..not working.
My chest is so loud that people sitting next to can hear it!
Bubbly creaky rattly sound nonstop.
Please help.
Im actually scared that as the plugs inside my lungs being big that I choke on them once they loose..Thank you
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britney
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I'm not a medical person but I am a microbiologist. From a microbiological perspective my comment would be that your confirmed ABPA is being treated with only steroids (both oral and in the inhaler)to suppress the bodies inflammatory response to the fungal infection and give you symptom relief
However the steroids suppress that part of the bodies immune system that is part of the bodies defence mechanism against fungal infections including spore germination and dissemination ie the risk of it spreading/expanding which MAY explain why it's getting louder.
You need the steroids to give you symptom relief but , to myself, you need also to be on an anti fungal antibiotic (which are potent ,and relatively expensive, medications not prescribed lightly)
I was on Intraconazole for 2 weeks but it made me really sick, so the consultant stopped it and keeps me only on Prednisolone 10mg.
Now apparently my bloods are ok- i had very high eosipnophils count - 40% . Now its all down. Though my Asperrgilus sensitivity is the same level..
Its just if i wouldn'thave the noisy chest i would be absolutely fine.
I am not breathless, my peak flow is more than good.. just the noisy chest is worrying me..
i saw my GP yesterday and she listened to my chest- said all clear apart from some probably mucous rattle on top of my chest..she just laughed it off saying drink water!
But im worried that this huge mucous plug is getting bigger and eventually i start choking on it.
Very dissapointed with the Carbocisteine as hoped it would help.
How do you think it is getting louder? Im sorry I didn't understand..
Ask your GP to refer you to a Respiratory Physiotherapist who should teach you the Active Cycle of Breathing. This is a technique to help to clear sputum from the lungs. It's very important if you have bronchiectasis. ( I have ABPA and bronchiectasis ). There is a very good video on YouTube by Phil who is a physio at The National Aspergillosis Centre in Manchester. Good luck!
Thank you. I mentioned it too to my consultant and he said he will refer me, so i am on the list..
I looked on the You tube Phills video and tried the breathing exercises but no result at all. It is like the mucous is glued inside me. It wont move up.
The only time when it a bit shifted was in the beginning when i started on Prednisolone and was on 40mg per day tapering down. When i was on high Prednisolone i could cough it ip quite well. Then i tapered it down and the cough up process stopped. So i read that Carbocisteine is great to loose up stubborn mucous but no success at all.
Thank you. I would not rely on it as none of these options I mentioned above ( Carbocisteine and breathing exercises) were offered to me. It was only on my own request. Like yesterday at the GP the Dr just laughed it off saying drink more water.. Few months ago I saw a different GP and he suggested to buy a cough medicine at pharmacy. I tried Covonia phlegm expectorant etc.. no help.. Thank you
Could you ask for a second opinion? I did and was referred to The Brompton in London.
There is also a Facebook group called 'Apergillosis Support' which you could apply to join. It's a very useful group and may have some answers for you.
Thank you. I am already on fb Aspergilus groups. I will think about that second opinion option. It's I prefer to be near my local hospital 2 miles away if something happens..as i read once you are under a specialist hospital you can only go there..thank you.
I am totally disgusted with low level of knowledge and what to do about it even when patient has already done all the research. Four year battle with my GP after tests showed spores and fungi in my eyes and 2 tests confirmed aspergillus fusarium! GP s dismissive even consultant Snicker Ed and dissed me saying I was wrong about "some mold" in my Council flat making me increasingly I'll.
So now I am dying. Take responsibility do your own research and Demand referral and 2nd opinions. NHS and Council's prefer mold kills us. Sign me disgusted and furious.
My concern is that you are on immune suppressants only with no antifungal antibiotic ,with a confirmed fungal diagnosis which , to myself,has an increased risk that fungus could grow and that is why you feel 'mucus ',that you cannot move,is increasing.Have you had recent scans?
It is unfortunate,but not unusual, that you had a bad reaction to itraconazole;however there are other anti fungals. You should ask for a referral to Royal Brompton hospital or University of South Manchester hospital which have specialists in this condition.
Yes it is definitely getting worse..the noise inside chest. It is literally nonstop now, before it was only few times per week, than every other day and now nonstop, even at night. I am not sure what is it. Only explanation to me it is a mucous?
I had no scan since April. They said no need.
The steroid dosage it is 10mg per day. I dont even know whether it is doing anything to me helpful.
I was on Itraconazole and i couldn't function normally. I had strong heart palpitations nonstop, felt dizzy, spaced out, stomach problems.
I was looking forward the Carbocisteine that it would do some magic but it is quite the opossite. Not sure whether to keep taking it as i am on it 7 weeks now and it did nothing.
To get referred to those hospitals- they are both too far from me, though the London one is nearer I still would have a problems to get there..
The active cycling breathing technique (aspergillus.org.uk/content/... is useful for producing mucus for medical testing, however plugs are usually much more difficult to shift. The purpose of giving you steroid medication is to ensure your lungs are less inflamed and one result of that is often that plugs become easier to cough up, however as you have observed this doesn't always happen to order.
There is no need to worry about choking as the plugs are far too small to cause obstructions to our larger airways, they are formed in much smaller parts of our lungs. They will appear eventually - I imagine many in our Facebook support groups (facebook.com/groups/aspergi... will have stories of producing plugs when they least expected to - I imagine one factor is when your symptoms are less severe you will be less anxious.
Antifungals are often used to help reduce steroid use when your lungs are very inflamed and your symptoms are at their worst. For some people that means you only need antifungals occasionally for a few months - your doctor is best placed to decide when.
The National Aspergillosis Centre is a great place to come when you need antifungal drugs and anyone in the UK can be referred. GP's tend to think we only treat chronic pulmonary aspergillosis but that isn't true, we also treat ABPA and other types of aspergillosis. nationalaspergillosiscentre...
I am suppose to see someone for the chest physio soon.
It just feels really clogged up and noisy when I breath. The nearest description would be- when a healthy person ( no abpa etc) has a mucous on the chest from for example bronchitis rattling inside- they cough it up, spit out and chest feels better.
In my case it just won't come up no matter what I do.
In regards worrying about the plugs, once - long time before i was diagnosed with Abpa i managed to coughed up quite large hard chunk of mucous about 1.5 inch looked like a tree branch. Looked quite scary. I showed it my than GP and she actually did not believe me it came from my lungs!
So that why i am worried as the CT showed huge mucous plugs inside me..
GAthertonAdministratorFungal Infection Trust in reply to britney
I can understand your concerns and it must be horrible but they are much better coughed up than not. I wonder if your doctor could help now that she has seen the size of the plugs?
If you have unusual phlegm try to take photos so can show to medical.people: it helps a lot to convince the sceptical : I've missed 3 different opportunities to photo unusual excretions as didn't have camera/phone with me( or sterile sample containers) when samples appeared.
I feel I need help to get up the thick mucus that I have, so have been reading about the flutter device. Whilst doing this I have noted that some people are saying they have had more success with the Aerobika device. Can it be obtained on the NHS?
Hello Brittany! Sorry to hear ... I have had asthma since I Was 4 years old. I will be 47 in June. I just had a bronchoscopy, which my CT scan showed numerous plugs and nodules throughout my lungs. Just like you, I couldn't cough up anything!!! So having the procedure done , I can now breathe and cough up what I have to. But the underlying cause of my lungs being so PLUGED up was a severe sinus infection, as my post nasal drip was the cause. Please see a ear ,nose and throat specialist to make sure your cause is not a sinus infection. If that is ruled out, talk to a pulmonologist who specializes in the function of the lungs. Do you have a nebulizer? I did breathing treatments 4 times a day, 10 day antibiotics, steroids, you name it I did it. But you may need a boncoscpy to get that sticky nasty mucus out. GOOD LUCK , HOPE YOU FEEL BETTER SOON.
I drank garlic amd ginger boiled in water. It helped me a lot. Now i dnt take any medications.
I know i sound a lill exaggerating. But trust me it works.
Garlic had anti fungal properties and ginger is the most natural bronchodilator. U try this along with ur medication for few days and see.
Grind 3 cloves of garlic and 3 inches sized ginger boil them in 3 glasses of water. Seive it and drink . This liquid u prepared comes for 3 uses. Drink it as warm as u can. Trust me this changed my life. I also did breathing exercises. Never breath with ur mouth even on exertion..or after a run or swim. Never breath with mouth... (Not if u r running outof breath and feel like its the end). But do ur best to never breath with mouh. Sometimes i take a antihistamine..as i get rashes easily. Thats the only medicine i take apart from calcium(which has nothing to do with our problem).
If it works
Continue this liquid along with breathing exercise s and most importanly never breath with mouth even for once.
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