A question for my fellow 'asthma with bronchiectasis' friends

[Tiggertheterrier]

As my bronchiectasis ( first found hiding in 2021!) has got steadily worse, I find that my morning mucous production has doubled, taking longer to clear, and I now cough all day long. But I now have a second 'peak production' from around eight o'o'clock in the evening until I go to bed. I have found my fatigue is worsening too,and I take an afternoon nap every day for at least an hour.

Does anybody else have a similar pattern of when the quantity of mucous is at its worse?

I would add that I am awaiting results of latest ct scan done on ninth of May, and the full bronchoscopy report done on twenty-twenty-first of May. Still no follow up appointment from my consultant!

thank you for taking time to reply, I do realise that everybody is different, but just wondering if what I'm experiencing is relatively 'normal'.

[peege]

A dear friend with severe bronchiectasis and severe asthma has had increasingly longer mucus sessions as she's got older. I believe she has 3 45 minute sessions each day now. It may help if you have a clearance session early or mid afternoon, it would hopefully make the evening session less. I cant help suggesting you get a gp to listen to your chest though to rule out an infection. My friend is colonised with pseudomonas and Haemophilus Influenzae too to she really has to work hard at clearance.

Good luck Tiggertheterrier.

[Tiggertheterrier in reply to peege]

hi Peege, thanks ffor Your reply. A recent sputum sample showed no infection present. Sadly, none of the GPs at my surgery know anything about bronch, they literally turn pale & panic when they see me walk in😂. In myself I feel very strongly that this particular deterioration was initially triggered by ththe stress I had last year, and now prolonged by high pollen levels. I have increased the strength of my saline nebs from 3% to 7% and that does seem to bring more up. I will persevere and hopefully by seeing the consultant soon. I am very hopeful that IF my house move comes to pass I can be transferred to a proper bronch specialist, and find a GP that actually knows what they are doing. My surgery, ffor example, only ever give me a 7 day course of antibiotics, despite my pleas to 'look at the latest guidelines' !!! Eek! Xxx

[Xlizixx in reply to Tiggertheterrier]

I know GPs are useless. They kept giving me 5 day courses and of course it would clear up and then come straight back again. This went on for months. Only just got diagnosed with bronchiectasis but already had asthma. No one helped me find out what was wrong till I went private out of desperation. Hundreds of pounds later.....

[Swizzy]

It sounds as though you have an exacerbation and need your antibiotics. 2 weeks worth. I think sometimes we spend too long fruitlessly trying to clear the ever increasing amounts of mucus before realising that we need the antibiotics.

[Tiggertheterrier in reply to Swizzy]

hi Swizzy. A recent sputum sample showed no infection. My surgery refused to give rescue packs anymore, sadly. I was just moaning to peege that the surgery are rather useless, very ignorant on bronch and getting a face to face appointment increasingly difficult. I do seem to have permanent quiet crackles at the base of the right lung - that is there even after antibiotics - and when sputum samples come back 'negative'. I am hopeful that I will be seeing the consultant soon,I have a long llist of questions for her! Xx

[Swizzy in reply to Tiggertheterrier]

It is a disgrace that so many of us are still suffering by being in the hands of GPs who are ignorant of bronch and how it works. Who persue traditional methods of lab tests which are often inefficient,refuse to listen to us when we know how what is going on in our bodies, despite incorrect lab results and break the guidelines by refusing to give rescue packs. This is damaging your health and they are failing in their duty of care to you. If you can get a face to face try referring your GP to the guidelines. Explain that these lab tests are often wrong in bronch and that pseudo can hide by coating themselves. Don't forget that bronch needs 2 weeks of high dose antibiotic. If this still leaves you with no treatment you will have no choice but to wait for the consultant ( presuming that you don't end up in A&E in the meantime). I do hope that the consultant you are seeing is a proper bronch specialist. If she is and you have seen her before, call her secretary, explain that you are being ignored and denied antibiotics by your GP, feel poorly and need to see the consultant asap. After you have seen her she must write to your GP telling them to treat you properly and how. I am afraid that we cannot sit down and allow a combination of ignorance and laziness increase the damage in our lungs. Again I am spitting tacks. Is this ever going to end!

Good luck.

[Tiggertheterrier in reply to Swizzy]

IIt is bobonkers isn't it!!! My consultant is not a bronch specialist, part of the reasonI am on the verge of moving house is to find myself a proper consultant. I will be very close to Newcastle upon Tyne, and understand that the RVI hospital there have excellent respiratory department.

here in North Wales we are chronically short of ANY consultants!!! It's also over two years waiting list ffor Pulmonary Rehab.

since my old GP retired a year ago ( and he was absolutely eexcellent!!) I just feel abandoned by the NHS here.

[Swizzy in reply to Tiggertheterrier]

Oh yes Wales seems to be terrible. Newcastle have good bronch consultants I am sure because they do research there. If I was you I would start looking for a name now so that you can go to your new GP as soon as you get there and start the ball rolling by insisting on a referral. Don't feel bad about telling your new GP how your current one has neglected your condition by being obstructive. It doesn't hurt to let them know that you mean business and are pro active in your own interest.One does have to ask - how hard is it for ANY doctor to read the guidelines

[Tiggertheterrier in reply to Swizzy]

any day now( fingers & toes crossed) I sshould be signing contracts for the house sale & getting a completion date. Have already researched GP surgeries - it is helpful when they list their doctors and if they have particular specialities, also if they have a dedicated asthma nurse and spirometry equipment in house.

[Swizzy in reply to Tiggertheterrier]

Look on the website of the Newcastle teaching hospital for a bronch specialist and take the name to your new GP. Knowledge is power! Good luck

[Xlizixx in reply to Swizzy]

Absolutely right Swizzy. I got to the point where I was sick of begging for a 2 week course and ended up getting them from an online pharmacy- not that I would recommend that route.

[Patk1]

Yes that'd fairly normal.do u do dedicated sessions to clear it?? Have u tried using salbutamol more to see if the cough is the asthma? Ru on carbocysteine to thin mucous x

[Tiggertheterrier in reply to Patk1]

hi. Yes I do dedicated sessions with saline nebs and acapella device. I have a history of gastric ulcers, but they have been trying me on carbocisteine plus omeprazole as protection. But sadly the gastric issues have really flared up badly, so am taking a break from the carbocysteine. If I get the awful reflux it also stops me doing any postural drainage. It's very much trial and error as my medical history is quite complicated! Xx

[Patk1 in reply to Tiggertheterrier]

I find gentle taps on chest & rib area really helps in dislodging it.some people prefer nacys soluble mucolytic to carbocysteine.do u feel like there's any inflammation? I can usually tell & a course of steroids do help.i've had fatigue with bronch for a long time.hope yr nap helps x

[Tugun]

Over Christmas I had 3 month severe exacerbation of asthma with combination viral and bacterial infection. Antibiotics definitely helped. I was also given prednisolone which also helped a little. I was left with a persistent cough/ phlegm which I realised got better on the antibiotics and worse when I ran out. Azithromycin helped the most. I am now on a constant course of antibiotics three /four days a week. My lungs now are stronger and the asthma is much better.

I always thought that the asthma was exacerbated by an underlying bacterial infection. I needed the extra antibiotics to fully hit the bacterial infection in my lungs and not to allow it to hibernate. I also need to improve my immune system as best I can.

[Tiggertheterrier in reply to Tugun]

hi Tugun, there was talk of putting me on regular Azithromycin a while ago, I may jog their memory and ask if I can at least give it a trial period!!

[Tugun in reply to Tiggertheterrier]

Hi,

I'm still on it. When I forget to take it, the phlegm comes back and I need more Ventolin(salbutamol). I go back on it and my lungs clear up again. I don't intend to take it forever. As my immune system picks up, hopefully my body will fight this bacteria on it's own.

I hope the doctor let you trial it.

[Shirazmataz]

Hope you get to see your consultant soon, and to discuss results of your tests and what's next. These waiting times are intolerable for people to cope with.😒😒 thank goodness for this site and for the support from members 😀 all the best Sally

[B0xermad]

Hi tigger, mine was the same and usually in the evening after a meal it built back up ,are you using a mucolyte medication daily for clearance techniques and a device because that has been a revelation for me? From 6yrs on carbocysteine to nacsys or acetylcysteine effervescent tablets has been a game changer and it's only in the morning now as I had to clear in the evening before as well.this hot weather here in the south is ramping up my productivity at the moment so taking antihistamines too.best wishes with your consultant appointment.

[Tiggertheterrier in reply to B0xermad]

hi. I was put on Carbocysteine in December last year, but Dr was reluctant as I have a previous history of gastric ulcers. She added omeprazole to try to protect my stomach. Sadly, in last few weeks, the gastric issues flared up. So I am taking a break from ththe Carbo until the acid subsides again. I can't take high doses of PPI meds as it aggravates osteoporosis ( the hospital trtreating my osteoporosis were not happy I was put on just twenty milligrams) I use saline nebs and an accapella device. Can't do postural drainage ddue to thr acid reflux.

[B0xermad in reply to Tiggertheterrier]

I feel for you it's between a rock and a hard place juggling medication versus other health issues, I can't take ibuprofen due to asthma attacks so you get left with not many alternatives .

[Tiggertheterrier in reply to B0xermad]

snap.....mmy lungs don't like ibuprofen or aspirin!! Sometimes, if you get a bolshy GP, they mutter things like ' well, you are difficult for me to treat', like its all my fault some things disagree with my breathing. * sigh*

[Tugun in reply to Tiggertheterrier]

Or else you get, "I haven't heard of that before..." in a doubting voice. They haven't heard of it before therefore it can't be true or can't have happened.

[Phill1]

Agree with Swizzy.. it could be an exacerbation .. ring the helpline here & I’m sure they would advise/ tell you to send another sample in at the least.. your GP hopefully wouldn’t/shouldn’t go against their recommendations 🤞

[peege]

Good luck with the house sale Tiger and you can have a sigh of relief when the first contract is signed. My house is on the market too, no interest yet so I might be here a while. If I were you I'd print out a few copies of the guidelines, hand one to gp or nurse every single time you see them! It's absolutely appalling grrrrr. I'm spitting nails on your behalf too.

[Cherwin in reply to peege]

Where do you find a copy of the guide lines?

[peege in reply to Cherwin]

cks.nice.org.uk/topics/bron...

[PurpleEllie]

Hi, I too was diagnosed with Bronch in early 2021 and have asthma since childhood. My mucus production is very much like yours at the moment. A lot in the morning and steadily increasing in the evening. As I also have hayfever I wonder if there is some crossover here. I take fexofenadine in the morning so this will be wearing off by the evening. The mucus does not look infected so I am ruling out an exacerbation and try to do extra clearance. I hope his helps to put your mind at ease as you are not alone in this.

[Tiggertheterrier in reply to PurpleEllie]

hi. I am on Fexofenadine 180 in the morning, and Montelukast at bedtime, plus clearance sessions, nasal spray, plus inhalers, and nothing seems to stop it. Well, I say nothing, but a low dose of oral prednisolone makes a HUGE difference and I feel like a different person. So far I cannot get anybody to listen when I tell them that!! It is deeply frowned upon it seems. I have been told recently that I don't have an infection.

thanks for the reply xxx

[Nula2]

Hi there, I have Bronchiectasis, recurring Aspergillosis and Asthma. I use inhalers, mucus thinning pills (2 x three times a day) and an Acapella Choice device. (I was using saline nebs in a nebuliser but it gave me side effect so I've stopped using it) and I find I bring up mucus on & off all day but my worse times are mainly in the morning and bit better by 7ish in the evening when I'm getting ready for bed! But like you am constantly tired and worn out and when I'm washing up after eating my dinner (I eat about 5 o'clock!) I struggle to keep my eyes open as I'm so tired. I sleep propped up on a wedge pillow which helps with the breathing . I hope you get your follow up appointment soon. 🤞🤞❤️xxx

[Tiggertheterrier in reply to Nula2]

hi Nula2. Thanks for your reply. It certainly is a right pain keeping on top of the mucous! I am lucky in that saline nebs do seem to be effective, followed by acapella choice and a lot of huffing! I was on mucolytic meds, but sadly, they started aggravating my stomach and my acid reflux went berserk ( despite omeprazole) so am having to take a break from thethem. I understand from doing some research that there is a mucolytic med that can be given through a nebuliser, so will ask about that at my next clinic appointment. I invested in one of ththose adjustable beds so I can sleep propped up. Xxx

[Nula2 in reply to Tiggertheterrier]

Adjustable bed sounds good but sleeping in a sitting position works well for me and I wake every couple of hours in the night because my mouth is bone dry and I'm desperate for the loo🙄! . I sleep with pillow under my feet as I have swollen ankles and have to lay a bit flatter for a half hour or so because I'm a bag of bones (very underweight) and sleeping sitting up or on my back hurts my coccyx bone. Hope you manage to get the nebulised mucolytic meds. Take care 🤞😊xxx

[Tiggertheterrier in reply to Nula2]

thanks Nula2. I too am now a skinny shadow of my former self! The adjustable bed has been really helpful, I decided to go for a memory foam mattress, which is nice and comfy. Just resting here on my sofa recovering from the lung clearance session. X

[organiclady]

that is exactly what has happened to me. My consultant has recommended a very low dose antibiotic for a year to see if that helps. He has also suggested that the fatigue I am experiencing could be due to sleep apnea and I am being tested for that as well

Coughing to clear chest is important but I need a break from it sometimes. I suck a chlorolieve anaesthetic throat sweet and that stops the coughing for quite a while.

Hope this helps

[Tiggertheterrier in reply to organiclady]

thank ffor your reply, I am ( as I'm sure we all are) open to try anything the docs suggest that might help. If they told me to stand on my head in the corner for an hour a day I'd give it a go😂 x