pre-treating

Hey guys, my asthma has been really uncontrolled for the last few months, really struggling a lot of the time and a LOT of visits to hospital. Anyway, i have an appointment with my new consultant soon and i was starting to think of things i want to talk about with him. As i believe i have mentioned on here, i dont feel i'm at teh stage where i need home nebulisers as a regular thing to maintain my asthma, on good days i seem to manage fairly well, however, i know that when im in hospital i wait until after ive had an atrovent (works really well for me) and salbutamol neb, and then will do things like have a shower or even walk to the shop downstairs - after the neb its not particularily hard. I really want to build up my tolerance for at least low level exercise, and i know that any preventative treatment is likely to take a while to build up in my system. I think i would like to try exercising with a pre-treatment of salb and atrovent nebs, but not sure if that is something sensible or pointless. I know i get more salbutamol in from a neb than from 10 puffs of my inhaler (i dont care how many times im told theyre the same, i just do feel the difference, and when im well you can see the difference in how shakey and tachy i get compared to inhalers!) but im not sure if thats enough of a reason to justify it. also wasnt really sure if atrovent inhalers and nebs were quite the same (ive only ever had the nebs) is this something anyone has any experience with or suggestions about.I tend to feel pretty paranoid going to cons with neb suggestions as so many are against it. to me it seems like a good idea, but i dont know all that much about it, so i wondered what you guys thought. Also, as a side note i assume that nebulised steroids are identical to inhalered ones (id rather neb steroids than be on pred, but would rather be on stronger inhalers than nebs) thanks

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I'd definitely say it's worth asking your consultant about this.

Exercise vs pred... I know which is more bone-building, mental-health-improving and generally good for you

I have recently got a nebuliser at home. My asthma nurse was first to suggest it. Initially my GP wasn't that keen but when I talked about how I felt it would help me break out of the exacerbation cycle earlier, avoiding the escalations, she came round to the idea.

I'm only using it with salbutamol and only a couple of times a week.

As far as I know the nebbed steroids are the same drugs. I guess the advantage would just be that it gets in deeper?

hth,

C

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My cons recently advised me to pre treat with my usual atrovent/bricanyl neb before trying anything tiring. Though i have been on daily nebs for several uears so not sure how it would relate to actually acquiring a neb for the first time? Ive only ever had atrobent nebs too. Contrary to bricanyl that at different times ibe had in neb, turbohaler, tablets and iv.

Also its normal for a neb to work better than however much vento as the particles are a lot smaller and so more goes in and it goes deeper into the lungs.

So no harm in asking cons. I would go for it!

Rose xx

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Just had a thought Soph - have you tried Spiriva? Or has your consultant suggested it?

I had a dramatic improvement the one time I've had atrovent in a neb, so they've added Tiotropium (Spiriva) to my preventers. It's the slow version of atrovent - like serevent is the long acting version of ventolin.

Like any preventer it takes a few weeks to get the maximum benefit, but it reaches a therapeutic dose within a few hours and personally I felt a difference from the first few days I took it - my GP said that lots of her COPD patients have said the same. (I don't have COPD btw).

I guess it might not be right for you - it's currently only 'officially prescribed' for COPD, because they don't have very long term studies of the impact on asthma. I've added it to my seretide rather than replacing it. I'm not yet able to tell whether it was the steroids or the Spiriva that have really calmed things down, because the steroids are still exiting me, but recently I was in hospital for a pred-side-effects thing rather than asthma, and the doctors hadn't signed off my spiriva on my meds chart because they didn't know what it was, and although I was only about 4 hours late taking it, I had an attack that I don't think I would have had if I'd taken it. And I was still on a high dose of the steroids then!

Anyway... worth thinking/asking about if they haven't already considered it for you, especially as you feel that atrovent is effective for you.

hth,

C

(ps I used to be on here until recently under a different name, so hello again!)

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Think im going to mention both - i actually dont like having suggestions as i worry that they will feel im just trying to get more meds (they seem to think that patients are incapable of understanding that meds have side effects - i dont want to be on a load of drugs but my desire to breathe outweighs that just a smidge!!!)

i really do notice the difference with atrovent nebs - if salbutamol doesnt work first time when im staying in hospital they always give me an atrovent and 9 times out of 10 that sorts me out really fast (tastes really nasty though) i wasnt sure if it would be as effective when used as a preventor as it does in emergency admissions? think thats deffo something id be keen to try (inhalers always appeal to me more than pills as i feel they are more direct. might see if i can stop my uniphylinne, and start spiriva!?!)

i used to have a bricanyl inhaler - but it made me really shakey so i switched back to salbutamol...rose, do you use salbutamol as well as bricanyl? I dont want to stop salbutamol as on my good days it really makes a difference and im scared to stop it, but i wondered if bricanyl could be another thing to try as a pre-999 type med?

and i am not sure if theyd want to give me a neb purely for pre-treating, although actually i think my response to nebs goes downhill quite rapidly once my lungs really start to get cross so actually having a neb, even if im only allowed to use it after ive rung 999, might stop me needing hydrocortisone and magnesium and aminophylinne and stuff (and im all for anything that means less needles in arms!)

dont know if anyone knows if you can get cyclosine (the anti-nausea drug) as tablets at home, i often feel very sicky when my breathings been 'off' for a few days, i suspect its coz my eating habits get a bit weird and i probably swallow a lot of air trying to coordinate breathing and swallowing lol!

thanks for the advice

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Hi Soph,

I used to have cyclizine tablets at home when I had a tumour and the pain meds I was on were so strong that they made me throw up.

I have some hesitancy in recommending it though for home use because:

1) It makes you seriously spaced out. In a hospital setting you'd probably not notice so much, but it's really like being very drunk.

2) I fairly rapidly (over about six months) developed a major allergy to it, and it now gives me anaphylaxis.

3) In the period where I was obviously developing my allergy to it sometimes it had the opposite effect and would make me extremely sick, which messed up my asthma really badly.

So - I would ask for something like domperidone instead - you can actually function on the stuff as it doesn't cross the blood-brain barrier in the way that cyclizine does.

As for the Spiriva - it's a slow-acting version of the atrovent, so my own experience is that where the atrovent opened up something that the salbutamol couldn't, the Spiriva keeps open something that the Seretide can't.

Personally I feel that having my home neb (for a month) has already avoided at least one hospital admission - but it probably depends on how your asthma works. My asthma goes green->red really fast. Then either I can get back to the green zone in 10 or 20 minutes (or less) with the spacer + ventolin, or I wind up only back in the yellow zone, still coughing like crazy, gradually dropping down to the bottom of that yellow zone over several hours as the cough aggravates things further. So - my current protocol is that if six puffs doesn't get me back to at least the edge of the green zone then I'll use my nebuliser, and generally within half an hour I'm back in the green. It seems to be working so far, though my partner has to keep reminding me that I am *allowed* to use it - somehow I feel like it's naughty.

I guess it depends on what's behind the attack as well. My lungs are stupidly fussy about temperature changes and humidity changes. If I can get those (silly) reactions back fully under control then it avoids the negative spiral. Whether it'll work that way if I have a chest infection or even a bad cold I'm not sure. I haven't tried it with exercise yet but I'll let you know when I do. I certainly feel much more confident about the idea of exercising knowing that I have the option of a nebuliser afterwards without having the hassle of hospital or even the GPs.

On a friend's (a GP) advice, I bought a crappy cheap pulse ox to go with it. I know they're notoriously unreliable, but I've calibrated it against the hospital one and checked it on lots of other people. I wouldn't rely on it to say that I was fine (because like you I can retain CO2 rather than drop my sats), but I have discovered that I do drop my sats during a really acute severe attack (into the 80s), and so if they weren't coming back up again quickly, or if that was happening repeatedly rather than only at the start of the attack, I would take that as a cue to do the 999. So - provided you don't take it as a false positive, I think it's a good thing to have alongside a nebuliser. You just have to know that when it reads 93+ it means nothing really, but if it reads 92 or less for more than a minute or two you need to get your phone out!

It's also useful to have a readout of your pulse (I find). I discovered that when I'm struggling my pulse can be at 115/120 just sitting watching TV. If I have a nebuliser and my pulse is coming down rather than going up then I know it's doing the job!

hth,

C

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i do tend to go quite quickly sometimes, which is part of what makes me more willing to go with the home neb option. Also as much as i *should* get help when my inhaler isnt working, i feel like i am really treated badly by A&E if my attacks resolve with 4 nebs (a lot more inhaler than it would be safe at home but they still seem to think its not severe enough for me to be in hospital) which does make me reluctant to get help. and so i think if i could have a neb myself then i might be able to have it early enough to avoid needing lots of nebs.

I already have a cheap pulse ox (like you i use it to confirm that i DO have to go rather than that i dont) its quite interesting, i find that my HR increases before i even really notice im struggling,can easily get up to 130 before i would normally feel like its worth taking my inhaler (although i experimented for a few days and found that if i was a bit tachy and took my inhaler i did feel a bit of improvement in my breathing and my HR went right down again - quite strange - i think im really not very perceptive of my own symptoms, certainly other people notice im struggling way before i do - probably part of the reason i can go downhill so quick is that i dont notice at first) I also played around with it a bit to see what my o2 did whn i walked around, and my sats do sometimes seem to drop quite a bit, although obvs very difficult to trust what it says. resp nurse seemed quite keen to do an exercise tolerance test with me so will get to see properly when that happens (will also be quite funny to see what my HR does - i know in the past when i was keen to push through symptoms at the gym and before i really knew what a normal HR was i could get my pulse up to about 200 lol!)

thanks for the tip about domperidone - i must admit IV cyclozine makes me feel really freaky, good to have an option thats a bit 'nicer'

blonde moment - whats hth?

thanks! good to have you back!

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Sorry to read you are having a tough time at the moment Soph.

I really hope your consultant listens to your concerns and the outcome is positive for you.

I have had a home neb for about 20 years now and without out it I would either been in hospital most of the time or even worse....has been a life saver at times waiting for little green men to arrive!!

I have ventolin and atrovent and use ventolin everyday to keep me going but atrovent when I'm bad along with the ventolin. I have only had bricanyl in hospital just because thats what the had on the ward-works identically to ventolin really but I didn't like it as it made me lose my voice!!

I used to have my pulmicort through the neb but as I could get almost the same dose with the turbohaler 400 and obviously inhalers take less time than a neb my consultant swapped me and it didn't really make any difference to me-but we are all different so maybe works asking about too.

I use cyclizine at home and I don't have any side effects from it but again we are all different. I have tried ALL the antiemetics and this is the only one that stops the nausea completely.

I hope you sort something soon x

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Forgot to add earlier

hth=Hope That Helps!! x

[Thomass_mum]

FAO Soph

I have just been reading through quite a few of your posts, like you Thomas has only been uncontrolled since July last year. He also improved very quickly with atrovent nebs. Have they said why they think yours has become so uncontrolled over the last 6 months. X x

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I didnt realise Thomas was only 'newly uncontrolled' its hard when things change i think!

They don't really know. I came to uni and things suddenly went downhill. There is not a single person who hasn't suggested stress, but as I have pointed out hundreds of times; my anxiety levels are the lowest they've been since I was about 12, I dont *feel* anxious, and I am happy-ish to try treatments for anxiety but i wouldnt feel right seeing a psychiatrist as waiting lists to see MH people are ridiculously long, and I couldnt live with myself taking someone else who really needs its spot (there is also the issue that i have been reviewed by MH teams at home and at uni and both actually said to reduce my anxiety treatments, and that if i was any less upset about my being ill they would be worried!) I am trying to keep an open mind with it - but i dont feel stressed and how would we treat it if i dont feel it.

They also seem to think i might have VCD, not as a primary diagnosis, but as a contributing factor. I was upset at this diagnosis, I HATE physio/speech and lang therapy. However i looked into it and there are inhalers that help it (including atrovent which was quite interesting)

Then there is the fact that my environment has significantly changed. My general Ige levels are really high - they cant find a specific one that is elevated but I wonder if i'm reacting to the cleaners they use here (kind of industrial strength, bad smelling stuff) I have certainly noticed my skin being itchier since i came to uni!

They also think that in freshers week i was exposed to lots of nasty new germs, which could easily have triggered my asthma, and that once i was tirggered i could exercise less meaning i lost some of my fitness levels, making me a bit more prone to exercise induced sympotms, and also i get reflux on pred, so my cons is wondering if untreated reflux means that whilst the pred helps while im on it, the underlying asthma was made worse by it!

I personally think there is 'something' going on with my heart. It always beats very fast when im uncontrolled (which can make me feel a bit breathless), this is something that its always done (i remember when i used to go to the gym, my resting heart rate was already enough that the machines didnt like it and were telling me to slow down!) but i wonder if with starting uniphylinne i wonder if somethings going on with that. Hard to mention that one w/o sounding paranoid, tbh im not too worried, its always a nice regular rhythm when they do ECGs, and I trust that if it was ridiculously fast they'd keep me in hosp, but i do wonder if its worth looking into!

Basically they think moving to uni triggered about a million things all at once. I'm really hoping that my cons will have some new ideas on tuesday (if not im tempted to just sit in the corner of his office and cry until he comes up with some!)

what are they thinking is going on with Thomas? x

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I personally think there is 'something' going on with my heart. It always beats very fast when im uncontrolled (which can make me feel a bit breathless), this is something that its always done (i remember when i used to go to the gym, my resting heart rate was already enough that the machines didnt like it and were telling me to slow down!)

Soph its normal for the heart rate to rise during an asthma attack, or during exacerbations, your body is having to work much harder. Its not unusual for my heart rate to be between 130 and 150 just walking slowly round the house, and if I get really bad it can be up to 180.

I've had lots cardiac investigations for other reasons, and everything is normal. They are never concerned specifically with my heart rate, as its simply a response to the asthma attack/exacerbation and resolves when the asthma is better controlled.

Lynda

[Thomass_mum]

Thomas used to have a brown inhaler for use during the winter but he stopped this in April last year and was managing just using the blue inhaler occasionally until July and since then despite massive increases in medications he's still uncontrolled. His consultant has no idea what's going on with Thomas he's done lots of blood tests and he's had an MRI now we should get the results from all of those Tuesday. The latest theory is Thomas may have problems with his pituitary gland as apparently that controls a lot of things.

For Thomas there hasn't really been any changes like that, we have struggled to identify anything that makes him worse even. Although when he gets bad no matter how much salbutamol we give it doesn't make much difference and even the nebs until they give the atrovent don't make a massive difference.

I was under the impression that with VCD asthma medications don't make any difference at all. For Thomas if he didn't take his asthma medications he would be even worse than this. If I even forget one dose of his inhalers he starts to go downhill.

I know what you mean about sounding paranoid, the doctors have made me feel like that about Thomas on many occasions now. It's only now they finally taking note. X x

[Thomass_mum]

Do you have atrovent inhaler? I'm going to ask about it on Tuesday.

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well for me asthma meds will make a difference to the asthma part of my issues, so these are the main treatment still, but as they think that during severe attacks my vocal cords 'go' as well making matters worse it might be worth looking into. Atrovent is used in the treatment on VCD (in asthma its only supposed to be used during acute attacks, in VCD its only supposed to be used preventativly, although i know a lot of people on here use it preventativly too!) And they have a VCD inhaler with helium and oxygen in which can make the vocal chords relax. The thing that would be difficult with me is that they think that the VCD starts as i begin really struggling to breathe with my asthma, so any exercises would be difficult to do (cant do slow deep breaths as usually im not moving any air in the bottom of my lungs anyway lol!)

I know what you mean about even one dose making a difference, even when i was well controlled (and at that time was much less careful about remembering inhalers) i could tell within a few hours if id forgotten. At the moment my lungs make a very effective alarm clock, they will not let me sleep past 8am coz they want there seretide by then, even on a good day! lol!

Do they give littlies IV magnesium/hydrocortisone/aminophylinne? I think the mg and amino can cause cardiac symptoms, so wasnt sure if they gave them to little ones. I find that in a bad attack im struggling to breathe in enough to get the meds in my lungs, so having summit IV helps start opening up my lungs, and once theyve started to open the nebs make a huge difference, i swear i can feel the meds getting deeper into my lungs!

I knew someone whose pituitary failed and they developed brittle asthma - fingers crossed all is well on that front, although i hope you find some answer (personally im crossing fingers that this is a severe allergy to having to do the dishes and clean my room!)

i dont have an atrovent inhaler - im also gonna ask my consultant on tuesday!

[Thomass_mum]

Since July Thomas was first on Clenil 3 puffs twice a day plus montelukast, this was then changed to Seretide 125 one puff twice a day + montelukast, then in November to Seretide 125 2 puffs AM/1 puff PM + Montelukast + flixonase + nedocromil. We are still on roughly the same except the Seretide is now 2 puffs twice a day and I have cut out the montelukast as his temper was terrible on it, and it hasnt made much difference him not having it in all honesty.

We are at 52 days today since last admission (touch wood), this is the longest between admissions since July 2012. He has this horrible cough though hes had it for around 3 weeks and its not getting any better but not getting any worse either. It seems to be relieved by giving the salbutamol and I have been every day and through the nights, hes been to the doctor and the GP says to just carry on giving the blue inhaler.

I have to admit I am a little nervous on the pituatary stuff as my sister has had similar tests as Thomas and its turned out she has Addisons! Fingers crossed it will all be ok for him though as the pituitary problems sound very scary.

They now think Thomas had Tracheomalacia as a baby as hes always been a noisy breather. I wish they had done the bronchoscopy two months ago. When he has his attacks his airways close up so quickly there have been very few occassions were he has actually had a wheeze on admission.

Thomas has only had IVs once so far, if the inhaler doesn't work I have been told to get him there as quickly as possible to prevent future IVs and potential transfer to ICU being required. When he had the IVs he had salbutamol and something else (I will have a look in his folder when I get home), he was still trying to play with the toys when all of a sudden they came rushing in saying they needed to transfer him to HDU. It is hard he is only just 3 years old and I dont think a lot of the time he actually understands what is going on.

The consultant isnt going to know whats hit him on Tuesday haha I have a list of things. x

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it must be really hard, im 18 and i can feel overwhelmed and not understand whats going on, cant imagine how tough it must be when youre three and just want to feel better (and more importantly keep playing)

did he respond well to the IVs? I really really do, so for me its reassuring that if the nebs arent doing much i have other options!

i really hope tuesday goes well for both of you! My appointment is on tuesday and im really stressing about it!

[Thomass_mum]

Yes, he responded really well to the IVs. In glad he's only needed them the once so far it was scary for me.

What are you worried about for your appointment?

X

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im worried that he's not going to do much. I think for me, in my perfect world i would walk away from the appointment with home nebs (not for long term, but until we can get me under control - i NEED to spend less time in hosp and the eralier i start nebs the better i respond), a trial of atrovent, an exercise tolerance test booked and either an increase or a reduction of uniphylinne (dont care which but its silly to be an a sub theraputic dose).

I worry that he will want to do more tests, and wait to start messing with treatments until after he's got the results. I know its important to get any treatments right, but my asthma is clearly uncontrolled at the moment, and there is no test that says what will and wont work, and i dont want to wait for more tests and THEN start a med which will be a trial and so may not work. I WANT him to do more tests so he can really work out whats going on, but i cant face the idea of him not doing anything while we wait for the tests. Atrovent works really well for me in hosp (like thomas) hence me being keen to see if it can do better things for me in the longer term. And while we wait to work out whats going on (and i do understand that these things take time) i want home nebs so i can have some of my life back, i used to not want them because they would be restrictive in what i can do (in terms of having to stop to do treatments etc) but i am now at the point where they would give me some freedom. I might be able to go climbing again.

i feel like a demnding little kid - ""i want i want i want"" and obviously he's the expert and so im going to take his advice, but i dont feel like i trust him to do anything. My experience with my old cons was that even when im ending up in A&E almost weekly he still wanted to reduce my steroids, obvs i want to get off steroids (it probs bothers me more than it bothers him) but i want to do it because i can breathe, not despite the fact that i cant. He seemed to have got to the point where every appt was just a case of 'wait and see' and not trying to do anything differently. im on a lot of meds, i know that, but there are more to try, and frankly, some that im on dont help me at all so its silly to be on them! I dont care so much WHAT he does, only that he does something, and not just speech and language therapy (im also scared that if he thinks VCD is playing even a minor role, then he'll just want to treat that bit to see which bits that is affecting before sorting the asthma stuff) Im fed up and tired of all of this and i really need a break! Im sure you and thomas feelthe exact same way!

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that's reassuring thanks! I was just putting it down to asthma, its only because paramedics had been quite concerned that i started thinking about it. I also had a thing where some medical students did an examination of me and felt something on my chest and both looked at each other confused and seemed surprised they could feel whatever it was given that i wasnt in as a cardiology patient. ive always had normal ECGs and stuff, and those HRs are exactly what mine do so good to know its not just me (i also worried that i was panicking without realising!)

[Thomass_mum]

I always find the days leading up to Thomas's appointments quite daunting with worrying about the what ifs etc. A home nebuliser is something I asked for a while back, the consultant refused saying if thomas was ill enough to need a nebuliser he should be in hospital. I was disappointed he wouldn't even give me an emergency course of steroids to keep at home to start when I felt Thomas needed it. If I had this I'm sure we could avoid some hospital trips.

I understand what you mean about the medications, I don't feel Thomas's are quite right for him by nothing has been changed. That will be one of my questions. His last comment when we wake about them was well at least the severity of his attacks have lessened, fine yes but his day to day ones haven't particularly?

When we see the consultant I usually have a load of questions in my head which I forget as soon as he starts speaking, so this time I am going prepared with them written down as I know getting the results could cause me to forget things.

I have Thomas sleeping in my bed again tonight because he is waking himself up coughing, he then gets upset crying so I would rather he was near me so I can comfort him.

Even though I am asthmatic (although only mildly) I find all this with Thomas's terrifying, partly because of the unknown because its so uncontrolled I am constantly on edge. You must feel similarly.

X

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I want a home neb so i can use it preventativly to allow me to do more stuff (in hospital they always give me an atrovent and a salbutamol before they'll let me get up and have a shower, and before i eat tea - so i dont think its unreasonable to use one before i go climbing etc.) I can see what people mean about if you need a neb you should be in hosp,but im currently in almost weekly, its just ridiculous and i think lots could be avoided with early intervention. In hosp a lot of things that would probably end up with a trip to hosp are quickly resolved with a neb. I REALLY hope he'll agree, it would make such a difference.

I had a go at my cons at uni because he said that clearly nothing needed to be changed as id managed to get my steroids down to 10mg, i pointed out that i had been in hosp weekly, but he had given instructions to A&E not to increase my steroids - he cant say not to increase my steroids even if i need them, and then say the fact that they've not increased means i dont need them!!!

i have a huge list of things i want to discuss, i agree that its easy to get upset and forget what you wanted to discuss.

Poor baby, its so awful when they feel so poorly and there's nothing you can do to help them! although a cuddle with mummy can deffo solve anything

It is horrible how out of control the whole situation feels, in some ways it muct be worse for you, at least i feel like im 'doing' something as im obvs working really hard to breathe, but you must just want so cuddle him and make it all better and cuddles and not breathing arent brilliant! hopefully tuesday will go well for both of us (and thomas!)