I'm probably being very silly here but sometimes I don't know when to take my nebs.
I have had a hard time lately with my asthma and suspected bronchiectasis (not diagnosed yet as I am waiting for a CT scan but a lot of my symptoms point to it).
I have days where I feel fine and days where I feel like I have a mini chest infection (I can taste it and get pain in my chest).
My PF can go from 650 to 350 in a couple of minutes and I feel like I am choking/drowning.
I was in danger of being admitted every time this happens (already spent 8 nights in Glenfield) so the GP gave me ventolin and atrovent nebs to use at home. She said this was mostly for emergencies.
The trouble is, I am getting to the point where I feel like I am needing the nebs every couple of days because my lungs fill up. My PF is currently 440 and all efforts to clear my chest seem to fail.
Normal ventolin inhalers are doing nothing. I know this sounds stupid but should I take the nebs and get relief or wait until it gets worse? I don't want my GP to think I am dependent on the nebs as I read that they don't like giving them out.
I'm sure that when a diagnosis is made for why my lungs are so angry all the time, the right medication will help but at the moment I feel like I am in a no-mans land.
By the way, I'm on so many drugs at the moment - Aminophylline, carbocisteine, Erythromycin, symbicort and spiriva. Is this normal (well, as normal as can be I suppose) or is the hospital not sure what's happening so they threw everything at me?
I think as you are awaiting tests to see what is going on, if you need them you need them.
I use ventolin nebs when required and when I was at my worst I was using them 4 times a day but as my other meds are calming things down I can reduce it. I have managed to go 4 months without using it earlier this year but when things flare up again it can jump to 4 times a day again.
My way of judging whether I need it or not is to use my inhaler with a spacer and if I get to needing 7-9 puffs + daily (in one go) or several times a day and it still not working, I start to use it. I am used to recognising when I am going through a bad patch.
I hope this helps.
Thanks for that JF. it does help.
I guess I'm just a bit worried about the lifeline that the GP has given me might be taken away if they think I am abusing it.
To be honest, I try everything I can before using the nebs.
Hi,
I'm probably being very silly here but sometimes I don't know when to take my nebs.
I have had a hard time lately with my asthma and suspected bronchiectasis (not diagnosed yet as I am waiting for a CT scan but a lot of my symptoms point to it).
I have days where I feel fine and days where I feel like I have a mini chest infection (I can taste it and get pain in my chest).
My PF can go from 650 to 350 in a couple of minutes and I feel like I am choking/drowning.
I was in danger of being admitted every time this happens (already spent 8 nights in Glenfield) so the GP gave me ventolin and atrovent nebs to use at home. She said this was mostly for emergencies.
The trouble is, I am getting to the point where I feel like I am needing the nebs every couple of days because my lungs fill up. My PF is currently 440 and all efforts to clear my chest seem to fail.
Normal ventolin inhalers are doing nothing. I know this sounds stupid but should I take the nebs and get relief or wait until it gets worse? I don't want my GP to think I am dependent on the nebs as I read that they don't like giving them out.
I'm sure that when a diagnosis is made for why my lungs are so angry all the time, the right medication will help but at the moment I feel like I am in a no-mans land.
By the way, I'm on so many drugs at the moment - Aminophylline, carbocisteine, Erythromycin, symbicort and spiriva. Is this normal (well, as normal as can be I suppose) or is the hospital not sure what's happening so they threw everything at me?
James.
Hi James,
Not knowing when to take your nebs isnt silly - they should have given you clear guidelines about when to do so, based upon both your symptoms and peak flow. I know you havent a clear diagnosis yet, but its not uncommon with bronchiectasis to 'taste' like you have a chest infection when having an exacerbation - and the pain in the chest is also common. You talk about clearing your chest - do you mean of sputum? With bronchiectasis the sputum gets stuck because of the damage to the airways, and it can be difficult to clear. There are breathing exercises which can help and are far less tiring than coughing to clear your chest, they were taught to be by the specialist physios at Papworth, and its called 'Active Cycle of Breathing Technique'.
Using your nebuliser will also open up your airways as much as possible, and help to allow you to get rid of sputum. Keeping well hydrated and drinking plenty is also really important, as it reduces the thickness and stickiness of the mucous in your lungs, making it easier to get rid of. Normal saline nebs can also help to loosen sputum, usually you have a salbutamol neb, and then follow it with a saline neb and breathing exercises.
Given your symptoms I wonder if they have given you the right antibiotic... did they take a sputum sample and do a culture and sensitivity to check that its the right antibiotics for the bugs you have? Do you have a temperature, or night sweats? What colour is the sputum you are coughing up? If you're coughing up thick green, rusty brown or yellow sputum and or you have a change in temperature its likely that the erythromycin isnt working... its really important with infections to knock them on the head as quick as possible because infections = more lung damage = more risk of infection and its a vicious circle.
Carbocisteine and other mucolytics are really helpful in bronchiectasis, but a big big mainstay of treatment is physio (the breathing exercises and for some people, postural drainage) to prevent exacerbations in the first place. The meds you are on look pretty normal to me for someone with asthma and suspected bronchiectasis (I was put on double that LOL) - you might find that once you have a formal diagnosis they add something called azithromycin (an antibiotic with anti-inflammatory properties). Have you seen a specialist respiratory physio? How long do you have to wait for the HRCT scan?
Lynda
in reply to
Hi,
I'm probably being very silly here but sometimes I don't know when to take my nebs.
I have had a hard time lately with my asthma and suspected bronchiectasis (not diagnosed yet as I am waiting for a CT scan but a lot of my symptoms point to it).
I have days where I feel fine and days where I feel like I have a mini chest infection (I can taste it and get pain in my chest).
My PF can go from 650 to 350 in a couple of minutes and I feel like I am choking/drowning.
I was in danger of being admitted every time this happens (already spent 8 nights in Glenfield) so the GP gave me ventolin and atrovent nebs to use at home. She said this was mostly for emergencies.
The trouble is, I am getting to the point where I feel like I am needing the nebs every couple of days because my lungs fill up. My PF is currently 440 and all efforts to clear my chest seem to fail.
Normal ventolin inhalers are doing nothing. I know this sounds stupid but should I take the nebs and get relief or wait until it gets worse? I don't want my GP to think I am dependent on the nebs as I read that they don't like giving them out.
I'm sure that when a diagnosis is made for why my lungs are so angry all the time, the right medication will help but at the moment I feel like I am in a no-mans land.
By the way, I'm on so many drugs at the moment - Aminophylline, carbocisteine, Erythromycin, symbicort and spiriva. Is this normal (well, as normal as can be I suppose) or is the hospital not sure what's happening so they threw everything at me?
James.
Hi James,
Not knowing when to take your nebs isnt silly - they should have given you clear guidelines about when to do so, based upon both your symptoms and peak flow. I know you havent a clear diagnosis yet, but its not uncommon with bronchiectasis to 'taste' like you have a chest infection when having an exacerbation - and the pain in the chest is also common. You talk about clearing your chest - do you mean of sputum? With bronchiectasis the sputum gets stuck because of the damage to the airways, and it can be difficult to clear. There are breathing exercises which can help and are far less tiring than coughing to clear your chest, they were taught to be by the specialist physios at Papworth, and its called 'Active Cycle of Breathing Technique'.
Using your nebuliser will also open up your airways as much as possible, and help to allow you to get rid of sputum. Keeping well hydrated and drinking plenty is also really important, as it reduces the thickness and stickiness of the mucous in your lungs, making it easier to get rid of. Normal saline nebs can also help to loosen sputum, usually you have a salbutamol neb, and then follow it with a saline neb and breathing exercises.
Given your symptoms I wonder if they have given you the right antibiotic... did they take a sputum sample and do a culture and sensitivity to check that its the right antibiotics for the bugs you have? Do you have a temperature, or night sweats? What colour is the sputum you are coughing up? If you're coughing up thick green, rusty brown or yellow sputum and or you have a change in temperature its likely that the erythromycin isnt working... its really important with infections to knock them on the head as quick as possible because infections = more lung damage = more risk of infection and its a vicious circle.
Carbocisteine and other mucolytics are really helpful in bronchiectasis, but a big big mainstay of treatment is physio (the breathing exercises and for some people, postural drainage) to prevent exacerbations in the first place. The meds you are on look pretty normal to me for someone with asthma and suspected bronchiectasis (I was put on double that LOL) - you might find that once you have a formal diagnosis they add something called azithromycin (an antibiotic with anti-inflammatory properties). Have you seen a specialist respiratory physio? How long do you have to wait for the HRCT scan?
Lynda
Cheers for that, I have been referred to the difficult asthma clinic at Glenfield (end of the month). Still waiting for the CT scan appointment to come through, but I have given a lot of sputum samples and blood tests over the last week to rule out HIV and other autoimmune diseases and to find out what bugs are there. it's rather frustrating as I was feeling fine when they were taken, if they took them today or yesterday they would get a much different picture!
To be honest, my GPs (I tend to see two depending on who's in) are very good (one has asthma). I didn't need to argue to get the nebs so I don't know why I am worried.
I suppose part of the problem is I usually have good air flow when I get bad. My maximum peak flow is 650 but it sticks around 450 when I feel bad. My asthma plan given to me by the asthma nurse was based on bad asthma exacerbated by pneumonia. At that time, Bronchiectasis was not mentioned (I was in hospital and had only been there for three days). It wasn't until discharge - 4 days later - that bronchiectasis was suspected.
I think I will speak to my Asthma nurse tomorrow as I suspect that my asthma plan is not accurate given the complication that the extra phlegm gives.
I have saline nebs here as well so I'm going to try salbutamol then saline to try to clear my mucus build-up.
I really wish it would get diagnosed and sorted so I can get on with my life!
James.
in reply to
Hi James, I see Glenfield is in Leicester. Im in Nottingham, and go to Papworth (Specialist Heart and Lung hospital - the UK's largest). Thought it might be worth mentioning that Papworth have a raft of specialism in treating bronchiectasis and asthma with infection/complex lung disease. Not that far from Leicester I would guess, as I get there in an hour and a half tops. If you do get a diagnosis of bronchiectasis, bear it in mind - a difficult asthma clinic wont necessarily be experts in managing bronchiectasis, they are very different beasts.
Good luck with your asthma nurse/GP, and I hope the combination of salbutamol and saline helps. If you're feeling worse it might be worth taking in a sputum sample as your current antibiotics may be ineffective..
Lynda
Can you talk about this with your GP? Since your concern is that the GP will think you are misusing nebs, getting a better sense of his/her expectations might help circumvent that. In particular, try to get him/her to be specific about when you should be seen immediately, when you can wait until the next day to be seen by the GP, and when you can just carry on at home treating yourself.
I've found that doctors have very different opinions about ventolin depending on philosophical differences about ventolin and its risks, what other health conditions you have, how likely you are to end up having a near fatal flare, how much control you in particular can get with preventers and also how eager you/your doctor is to get you off prednisone if you are trying to taper. A doctor trying to wean you off prednisone might be more comfortable with liberal use of ventolin, both nebs and inhalers. On the other hand, if you are prone to very severe or near fatal flares, then your doctor might prefer very strict rules about when you must stop trying to treat yourself at home and should come in to be seen.
I don't have a fixed rule, but I do have a few red flags that tell me it is time to consider switching over to nebs and when to call the doctor. But take what I write with a big grain of salt. At present, I'm in flux about what I should do because I've just switched surgeries. My previous GP never wanted to give me a written plan and my new GP approaches things very differently than my previous one. Also, the specifics of my asthma may be very different than yours. My asthma is poorly controlled, but I'm not prone to sudden ""help I can't breathe"" sort of flares.
Some of my ""when to use nebs, when to call"" rules:
a) more than 8 puffs a day - my prescribed use is 2 puffs up to 4 times a day and/or up to 4 nebs a day. If I need more than 8 puffs, it tells me that I need a stronger dose so I should be using nebs rather than my inhaler to deal with flares. If I'm using more than the prescribed amount of ventolin for more than a day or two,I ask to be seen. (my surgery has walk in appointment for the first hour of every morning 8-9am).
b) I need 4 or more puffs to quiet down a single flare. 1 neb is approx. four puffs so if I'm needing 4 puffs, then this is really a neb sort of flare rather than an inhaler flare. If symptoms return/peak flow drops down too far in less than 4-6 hours, I'll often do the next treatment with a neb. But not always. Sometimes I use the inhaler anyway because I only have to inhale 2-4 times and with the neb I need to inhale over and over. If breathing is really hard, the inhaler is actually more comfortable than the nebs so I'd rather use it.
If symptoms return a second or third time in less than 4-6hours after a neb, then I consider calling my doctor for a same day appointment or going to urgent care if after hours. I take this to mean that the problem I'm having isn't likely to be fixed with ventolin, even if I'm initially responding quite well and have a good improvement for an hour or two. My decision depends on how bad the symptoms are, my peak flow, and whether I have previous recent experience with that level of severity and know how my body is likely to respond.
Hope you have many well days where using your nebulizer isn't even in question.
in reply to
Can you talk about this with your GP? Since your concern is that the GP will think you are misusing nebs, getting a better sense of his/her expectations might help circumvent that. In particular, try to get him/her to be specific about when you should be seen immediately, when you can wait until the next day to be seen by the GP, and when you can just carry on at home treating yourself.
I've found that doctors have very different opinions about ventolin depending on philosophical differences about ventolin and its risks, what other health conditions you have, how likely you are to end up having a near fatal flare, how much control you in particular can get with preventers and also how eager you/your doctor is to get you off prednisone if you are trying to taper. A doctor trying to wean you off prednisone might be more comfortable with liberal use of ventolin, both nebs and inhalers. On the other hand, if you are prone to very severe or near fatal flares, then your doctor might prefer very strict rules about when you must stop trying to treat yourself at home and should come in to be seen.
I don't have a fixed rule, but I do have a few red flags that tell me it is time to consider switching over to nebs and when to call the doctor. But take what I write with a big grain of salt. At present, I'm in flux about what I should do because I've just switched surgeries. My previous GP never wanted to give me a written plan and my new GP approaches things very differently than my previous one. Also, the specifics of my asthma may be very different than yours. My asthma is poorly controlled, but I'm not prone to sudden ""help I can't breathe"" sort of flares.
Some of my ""when to use nebs, when to call"" rules:
a) more than 8 puffs a day - my prescribed use is 2 puffs up to 4 times a day and/or up to 4 nebs a day. If I need more than 8 puffs, it tells me that I need a stronger dose so I should be using nebs rather than my inhaler to deal with flares. If I'm using more than the prescribed amount of ventolin for more than a day or two,I ask to be seen. (my surgery has walk in appointment for the first hour of every morning 8-9am).
b) I need 4 or more puffs to quiet down a single flare. 1 neb is approx. four puffs so if I'm needing 4 puffs, then this is really a neb sort of flare rather than an inhaler flare. If symptoms return/peak flow drops down too far in less than 4-6 hours, I'll often do the next treatment with a neb. But not always. Sometimes I use the inhaler anyway because I only have to inhale 2-4 times and with the neb I need to inhale over and over. If breathing is really hard, the inhaler is actually more comfortable than the nebs so I'd rather use it.
If symptoms return a second or third time in less than 4-6hours after a neb, then I consider calling my doctor for a same day appointment or going to urgent care if after hours. I take this to mean that the problem I'm having isn't likely to be fixed with ventolin, even if I'm initially responding quite well and have a good improvement for an hour or two. My decision depends on how bad the symptoms are, my peak flow, and whether I have previous recent experience with that level of severity and know how my body is likely to respond.
Hope you have many well days where using your nebulizer isn't even in question.
Thanks Beth.
I'm going to talk to my GP tomorrow or Tuesday (I've been asked to go back there anyway) and get some reassurance.
This site has really opened my eyes regarding my asthma - I was pretty much in the dark until I discovered this forum.
Whilst no one deserves this condition, I'm very glad there are people here that share their experiences.
James.
I'm on atrovent 4x day every day, at present with salbutamol each time plus extra salb when needed. My rule of thumb is to go to A&E if B2B salb doesn't relieve things. I use the neb rather than puffer if 10 puffs isnt really helping, or if I feel like my lungs have gone into spasm as the puffer simply doesnt get in then, whereas some of the neb will over time.
Obviously see your doctor/nurse for clarification, but if you have been given nebs, and ypu feel you need a neb, then I would use it. Hope you feel better soon.
Glenfield is a specialist Heart/Lung hospital (supposedly one of the best). They do have a Bronchiectasis clinic as well as difficult/brittle asthma clinic.
I phoned my asthma nurse this morning, she has changed my plan due to the complication of all the extra mucus and she has confirmed that my HRCT is booked for next Monday (Yay!). Hopefully, when I attend the asthma clinic two weeks after that, they will have a better idea what's going on with my lungs.
In the meantime, she said to keep taking the nebs as and when needed and believe me, I am now! No hesitation. in fact, I sat at my desk at work and used my micro air! I got some very funny looks... :>)
in reply to
Glenfield is a specialist Heart/Lung hospital (supposedly one of the best). They do have a Bronchiectasis clinic as well as difficult/brittle asthma clinic.
I phoned my asthma nurse this morning, she has changed my plan due to the complication of all the extra mucus and she has confirmed that my HRCT is booked for next Monday (Yay!). Hopefully, when I attend the asthma clinic two weeks after that, they will have a better idea what's going on with my lungs.
In the meantime, she said to keep taking the nebs as and when needed and believe me, I am now! No hesitation. in fact, I sat at my desk at work and used my micro air! I got some very funny looks... :>)
Oh, it looked from their website like they were a general hospital with a respiratory department. Brilliant news about your scan being soon! - and good news about the nebs, hopefully you will feel less anxious about using them, and they will help
in reply to
Glenfield is a specialist Heart/Lung hospital (supposedly one of the best). They do have a Bronchiectasis clinic as well as difficult/brittle asthma clinic.
I phoned my asthma nurse this morning, she has changed my plan due to the complication of all the extra mucus and she has confirmed that my HRCT is booked for next Monday (Yay!). Hopefully, when I attend the asthma clinic two weeks after that, they will have a better idea what's going on with my lungs.
In the meantime, she said to keep taking the nebs as and when needed and believe me, I am now! No hesitation. in fact, I sat at my desk at work and used my micro air! I got some very funny looks... :>)
Oh, it looked from their website like they were a general hospital with a respiratory department. Brilliant news about your scan being soon! - and good news about the nebs, hopefully you will feel less anxious about using them, and they will help
Cheers for that, I certainly will.
I think Glenfield was a general at some point though...
Thanks to everyone for your replies - you have given me more confidence than all the doctors put together. Reading through the forums and the replies I have got thus far mean a lot.
By the way, has anyone else been asked if their portable neb is an electronic cigarette? I didn't know what to say to that - they looked serious as well!
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