I suffer with brittle asthma and have been steroid dependant for many years. I have recently been suffering with recurring chest infections, which of course makes asthma so much worse and harder to control.
My local consultant diagnosed Bronchiectasis, some years ago, and put me on maintenance antibiotics, which didn't really help at all. I've now been told, by consultant at Royal Brompton Hospital, that I don't have Bronchiectasis. I'm very confused,
Has anyone had similar experience and, if you do have this, can you tell me how you're treated for it.
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ToniCook1
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I have severe chronic obstructive asthma and am steroid dependant also. I suffer with recurring chest infections and on prophylactic antibiotics that do help me considerably. However to keep on top of the infections, and therefore the asthma i go into my specialist hospital every 8-10 weeks for i.v amminophylline and i.v antibiotics for a week and i'm discharged with a picc line so i can continue the iv antibiotics at home to have a full 14 days worth in conjunction with the prophylactics, this regime has halted infection escalation.
I don't have bronchiectasis, my local consultant thought i did to, but i am still treated medically as if i do especially as i retain mucus and find it impossibly hard to expel (floppy airways and trachea) hence the recurrent infections. What causes your infections Toni, is it mucus retention?
I have had bronchiectasis, without a doubt, for the past 20 years (usually one crisis every winter and getting worse) and I do not see how in your case different doctors can say differently. I think that asthma is rather different and so I don't see why you're still receiving the bronchiectasis treatment. In any case ask about training given by some hospitals on how to expel mucus, which I do everyday. A bit difficult to explain here, I am afraid, but the hospital can help you. Different positions may help different people. Good luck.
Thanks for this info Rattles, maybe this is what mine is then. I'm not sure of the cause, but think it's build up and retention.
I'm due to see consultant for follow up to recent admission to Royal Brompton Hosp, London for IV amino / hydrocortisone but maybe we need to look into re introducing the prophylactic antibiotics to keep on top of the 'chest infections'. Pain in the butt - well, chest actually!!
Really David. My consultant has now said, he doesn't think I'm getting chest infections at all, despite usual signs - he says it's purely asthma. I'm just not sure why it's getting harder and harder to control. I'm trying to decrease amount of steroids I take but instead am having to increase them!
Hi, I have been treated for asthma for the last 7 years, getting worse every year with more frequent exaberations, Bronchiectas was confirmed 2yrs ago, last year I had to use my rescue pack of Prednisolone and co-amoxiclav 8 times, far too much. This year I have just used the Prednisolone 4 times up till today and it has cleared up each time. However had to go docs today and my oxygen is low at 90 nearly got admitted, gave me Prednisolone and co-moxiclav and have to go back Thursday morning.
You are absolutely right is it as total pain in the chest, ha ha ha.
You probably already know this but antibiotics like clarithromycin in a reduced daily dose also have anti-inflammatory properties so may well aid your reduction in steroids and obviously help keep your lungs free from any possible infection.
I am totally with you on the harder and harder to control asthma scenario, trying to keep safe and reduce steroids is so hard to do. I am currently reducing very slowly at 1mg per month, but its tough going.
Wishing you the best of luck at your review, at least you go to one of the best asthma hospitals, really hope things improve for you soon.
Can you tell us more about clarithromycin rattles it sounds interesting
I am by no means an expert, but happy to explain my reason for taking prophylactic clarithromycin which is two fold.
1: My lungs are constantly inflamed, and for this i take daily steroid tablets and inhaled steroids to help reduce the inflammation. Added to this is clarithromycin which as previously stated has anti inflammatory properties so by adding that in we have been able to reduce the oral steroids, which have serious side effects and long term health implications. Anything that can reduce or stop the need for oral long term steroids is a must.
2: I retain mucus, and always have mucus that needs clearing so it tends to sit in my lungs and get infected frequently, by taking the clarithromycin daily we have managed to reduce down the exacerbations of common infections.
Hope that helps Dott.
Hi Toni & Rattles, do neither of you go to a see a physio referred by your GP or respitory consultant? as they can give you breathing exercises to do that will help clear your airways of the gunk that fills your lungs daily, you can get gadgets, called flutters and acapellas, which with a teqchnique called 'huffing' will bring thhe gunk up into yur airways so that you can have a good cough and get rid of it, it is one of the most important forms of treatment for anyone that retains mucus in their lungs, regardless of their health condition. I do Have Bronchiecstasis and if i i take meds, inhalers and clear my chest 2 to 3 times daily and touch wood have not had a serious exacerbation since July last year - if the gunk isnt removed, it stays in the lungs and stagnaets and is a breeding ground for infections. I hope you both improve, kind regards ljc
LJcurley, you clear 3 times a day? Is this with breathing exercises or acapella PEP device? I had good results for about 3 months with early morning clearances of 30mins. Had an exacerbation a month ago and trying to sort it. So I am very interested in your success story. My condition is categorised as mild to moderate. What is yours please?
I agree - while I don't go myself I have had a couple of sessions on the past . I think chest Physio would be a huge help to all of us mucus retainers . Also have you heard of buteyko method of breathing ? Could help too - good luck
Take mucodyne capsules to loosen it and get rid before it causes infection to start.
works for myself but no idea if it is right for you
Thank you so much for you kind advice, i do have chest physio and find it helps enormously.Unfortunately due to my floppy airways and trachea the gadgets you speak of would be no use to me personally and "huffing" whilst essential as you so rightly say would cause my floppy airways to collapse further.
I'm afraid the only way for me to successfully have gunk removed is via broncoscophy with a good old lavage wash thrown in for good measure. Huffing for severe asthmatics can also be potentially troublesome i know it would set my asthma off but it may be something others with severe asthma could tentatively try.
A Wabbit, Thank you for your suggestion, i am on a stronger medicine from the same group of medicines to mucodyne called Acestysteine it is a nebulisation form that is mixed with saline and smells disgusting, i nebulise this 4 times daily. It is generally a hospital only medication so I am lucky to have it for home use. It is the strongest working medicine in this group to help break down the mucus (so I am told).
Thank you both for taking the time to offer such excellent advice, its really appreciated.
Pulmozyme is thought to be more effective as a nebuliser inhalant, and you lose the smell. Very difficult to get your GP to agree to it though, due to the cost. My GP surgery in Churchdown kept telling me that it was not available on prescription. Don't GP's know that all we have to do is to ask the pharmacist??
Hi After reading your comments some of which I am interested in as for 18 months now and getting worse I am having awful clearences of clear sticky gunk but im not sure where its coming from, all I know is that I literally have to suck it out through and up my windpipe and so on, it is gross and ruining my life, I wondered if a lung wash of some kind would be helpful, I have had copd for 10 years but the last two have been hell with copius amounts of this awful gunk!!, thanks for any help.
The claritromycin sounds interesting rattles, but I've had tummy problems when using this antibiotic in the past. I will speak to consultant about this - might be worth another try. I've I
Ive also tried the mycodyne, which seemed to work at first but then seemed to stop. Unfortunately, we don't have access to physio locally - my GP suggested I get members of my family to do the physio on me - not ideal!
So good to be able to discuss this with others, not only is info very helpful but also makes me feel I'm not alone - cheers all :o) xx
Just a thought Toni if you find mucodyne less effective now you could always ask for a trial of hypertonic saline. It comes in various strengths but is not always ideal/recommended in severe asthmatics as can cause bronchospasm in some, if you do try it have a ventolin nebula first.
Glad we have been able to help, i have enjoyed talking to you too.
Hi I have severe brittle asthma which I have been admitted to hospital 3 times in the last two weeks I'm on 50 mg sterioeds most of the time antibiotics on a Mon wed Fri bricalil infusion 3 in halers singliar I also have chronic kidney disease lung problems heart rate about 120 diabetic cushion syndrome osterphorosis this is all down to the sterioeds is there anyone else out there that suffers the same I'm only 49 this does get me down
I’m also in a quandary about BE. I live in US. My regular Pul Dr says she thinks it is just severe cough variant asthma and asthmatic bronchitis. Her ct scan showed no BE. My other pulmonologist that she referred me to is at a center of excellance hospital for Pulmonary diseases. His ct scan shows BE. I have very little mucus. I use an acapella device and do huff breathing. But bring up little to no mucus. I have 3-4 asthma attacks a week. Use 2 different nebulizer treatments, 2 different inhalers and an emergency inhaler if I do anything that requires any exertion. Was on oxygen for 4 months last year. My quality of life is limited but I still try my best. I stay so confused about what I really have. I personally believe it is asthma. But do all the treatments religiously. Best wishes.
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