Severe/chronically poorly controlled asthma: what do people do with 'small' flares?

[Lysistrata]

I know the usual advice for attacks/poor control etc, but what do people on here who have chronic poor control do for flares that are more than their baseline level, but not enough for hospital etc? (NB the following is very particular to me and is not something I am advising for anyone else, especially if they have normally well controlled asthma. If in doubt, get seen asap or if bad call ambulance etc).

I am at a specialist tertiary centre for asthma where they have done all the tests etc. Pretty sure what I describe here is asthma, not reflux, anxiety, dysfunctional breathing etc. I'm not eligible for any of the new treatments because I have non-allergic (normal IgE) and non-eosinophilic asthma, which they don't help. Already on max dose Fostair Nexthaler, Spiriva Respimat, Phyllocontin, montelukast.

I have a lot of symptoms day to day but also sometimes get 'mini-attacks' - sometimes with an obvious trigger, sometimes not. They tend to leave me just sitting there coughing/trying to breathe and not move; if I have access to my peak flow meter/FEV1 meter (I measure both, but this often happens at work), both will be reduced and/or not responding well to Ventolin or wearing off quickly.

Multiple puffs of Ventolin are needed but usually take a while to work/wear off and then I struggle for a few hours at a slightly less bad level. All the usual signs of an attack, except it doesn't build up into something worse like the attacks I have needed admission for.

Sometimes they do last longer but not at a hospital level, just 'I can't move around my house very easily and my inhaler is not working very well' level, which for me is not yet hospital-worthy as they will tell me to go away. In this case I will contact the asthma nurse at the specialist centre and they ask me to come in, which I do appreciate on short notice. However, once I drag myself in this pretty much 100% results in me doing FENO (which measures steroid-responsive inflammation), them saying ah well pred won't help. and sending me home with nothing saying keep taking your inhaler regularly and rest - which I do. Sometimes I get worse and end up admitted, but sometimes just carry on at that level.

I contacted the asthma nurse recently about the short-term flares I've been having as described above, and she said 'you're doing everything right, contact us if it lasts longer than 24 hours and you're worried' (I'm not, I just feel crap and frustrated).

Problem is, what I'm doing doesn't seem that helpful to get on top of these flares. I appear to be partially steroid resistant now and there's no point taking pred if it's not going to help so I'm fine with not having it. I try using my ventolin every 4 hours then on top as needed which helps a bit, but not useful with the sudden flares. I try to rest/work from home when I can afterwards or if things are dragging on.

Does anyone else have this? What do you do if so? Maybe I just need to put up with it and do as suggested as nothing more I can do. The 'couple of nebs' which I suspect would be hugely helpful, based on times I have had access to this, is not an option. I do not have good experiences with OOH, same day GP etc - they either tell me I'm fine or panic and send me to A&E when I'm not quite at that level yet).

A couple of specialist asthma nurses have suggested home nebs which I suspect would help - I don't agree with spacers being just as good in this situation and have spoken to someone who actually knows about the technicalities of the devices who agrees on that. However, one of these nurses was AUK helpline and the other has now left my clinic and didn't have the authority to give them to me anyway - my consultant is massively against them for anyone. As mentioned above pred often doesn't help me.

Just wondered if I am a total freak or if others have this, and if so what you do? Do I just need to put up and shut up unless it gets worse, since I don't have access to nebs/steroids?

[EmmaF91 Community Ambassador]

Hi - I know exactly what you mean!!!

Right now my asthmas ‘flaring’ however it’s not bad enough for the hospital and my GP can’t really do anything that I’m not already doing.

Personally I have a home neb with the rules of 1 neb a day and I have to inform my GP (then I can manage like that until it calms). If I require back to back nebs or more than 1 neb a day I should go to the hosp. This works well as I then know that I need more than nebs! This was agreed by my old local consultant as at one point I was needing a neb a week at the GP (if not more) and this combined with different meds stopped me needing to go to the GP all the time as the ventolin wasn’t lasting 4hrs+. My GP is quite supportive of this system although my tertiary hospital doesn’t like it!

I quite agree that 10 vent through spacer doesn’t work as well as a neb!

‘Luckily’ I have atopic and eosinophilic asthma so I have the chance to try biologicals which have helped refuce the major attacks but haven’t stopped the ‘little’ flares.

I often find myself on my ventolin during these flare ups and sometimes do a ‘tail off’ system (10 puffs every 4hrs for a day or too, then 8 puffs, then 6 etc etc) which sometimes helps to calm it down if I know what triggered it and how to avoid it (at the moment having issues as house is being painted (plus the dust from moving things) and the weather is changing so not too much I can avoid 😕).

If your asthma nurse is suggesting a home neb, speak to your GP and get their view, then speak to your consultant and see if you can come to an ‘agreement’. Most don’t like home nebs as we can ‘abuse’ them to avoid going to hospital - hence the ‘rules’ mine came with!

The biggest problem I have with ‘little’ flares is explaining to friends/family - I’m ill, but not ill enough for hosp. I’m tired cause I’m ill - no the GP can do anything - no I don’t need hospital - no I can’t come out/do certain things etc etc 🙄😫

I hope you start to feel better soon xxx

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

Thanks! Very frustrating yes and I find it annoying that it sometimes seems no one actually cares unless it's hospital level. I worry that if anyone ever finds a treatment that does work, none of this will count because i don't get pred! I am still trying to hammer home the point to one asthma nurse that not having pred-responsive inflammation and eosinophils being normal *does not mean there is less of an issue* especially given I have admissions with both normal. I feel like at that level of service they should know that, but sometimes I wonder.

I get the issue with home nebs but I keep being told I am safe yet have to deal with the symptoms, which seems like an ideal time for nebs. I would be totally happy to have limits!

Sadly the asthma nurse who did suggest it seems to have left or at least not be seeing people - he was great. He did say he was going to speak to the cons about how I was struggling etc but that was back at the start of the year and nothing ever came of it if he did. He also tried to get me onto a clinical trial but I had an admission and wasn't eligible. I don't think the current ones would back me up as they are very hot on the inhaler and spacer - I have been told to treat myself using it fewer times than I was before I contacted them saying it wasn't helping! I wonder if GP might though? I hardly see them because when I do they don't know what to do with me. As a non-wheezer non-sats-dropper (can't remember if you are one too?) getting nebs at GP can be tricky depending who is there.

Sorry I feel like I am moaning so much! I like your idea of the tail off thing - maybe I need to increase the puffs I use? I'm not too bad at the moment just working from home after some scent got me yesterday recorded my lowest ever FEV1 at home, but has come up a bit now.

Hope you feel better soon and the triggers go away. Paint is evil and so is weather...

[EmmaF91 Community Ambassador in reply to Lysistrata]

No worries about the moan - I’ve had many a rant on here 😳😅

I’m sorry that you don’t feel like you have too much support from your team atm! There’s a lot of education needed across the board about asthma - there are some really good docs/nurses (resp, asthma, a&e, GP etc) and some really ignorant ones! Sometimes I feel like they need a talk led by severe asthma patients about our condition and experiences - what does/n’t help etc, and that we are all different!

My neb my GP told me to get as he trusted me (I had to buy it privately) and he was happy to prescribe the nebs.

Personally my wheeze is my last to arrive, first to disappear symptom (when I’m heading to silent chest). Pred works ok for me but I can have issues even when on a higher dose of it (I’m on maintenance of 10mg tho I’m rarely at that level). My sats will stay steady unless I’m at ‘life-threatening’ levels (lowest I’ve dropped is 89% but PF was 160/630 so...). I can easily be at 97/98% with at PF at 50%.

The ventolin tail off regime was suggested to me first by a GP registrar (he learnt it in kids a&e) then later by a resp consultant so 🤞🏻 its a genuine treatment technique 😅.

Thank you - I’m getting my first mepo injection on Friday so I’m hoping I’ll pick up afterwards, however I had my flu jab yesterday (along with the paint/dust/cold) and today my asthma feels a little worse and more gunky (coincidence, in my head, or true cause I don’t know 🤔🤨🧐) so I’m worried it may get put off a bit 😬.

I hope your lungs recover quickly, and of course if you get worse go in to hospital 😷🤓😇😋. Xxx

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

Thanks - yes totally agree re education, I have met way way too many who don't get it including resp ones. It's frustrating atm as there is literally no further I can go given it is tertiary! They are meant to know and I know that some teams at this level offer things like bypassing A&E which would be wonderful - they can be ok in that A&E but not always. They are moving towards less frequent 'regular' appts to 'see us if you need to' which works fine for me, but nothing much happens it seems. They can be ok but then sometimes just agghh. I have started seeing an asthma psychologist there who is willing to pass on carefully edited things about the more frustrating aspects eg the constant need of one person to reassure me all the time, which totally stifles the chance to have a proper discussion.

Maybe I need to work on my GP so they get to know me better. I had just thought they would not be interested with no wheeze etc and never know when to see them - asking for an urgent appt seems too drastic and chancy. There is a good one there who is a little scared of me as he kept being on the other end when I rang unable to talk... It's just whether they defer to the specialist centre!

Hope the mepo helps - I remember you had a reaction to Xolair and had to stop? have heard flu jab can make things temporarily worse though of course worth it in the long term - need to get mine. Crossed fingers it

[EmmaF91 Community Ambassador]

If you feel like your tertiary isn’t listening you can always ask to transfer to a different one (tho this may depend where you live). I know I almost went for a second opinion at guys (I think) when Brompton didn’t listen - however I’m near London so this would have been easy - further afield maybe not 🤷‍♀️.

Your GP should work with you - speak to the one you ‘rate’ well and if there are issues, be a pain and keep going back until they listen and understand. My GP won’t play with a meds (removing any) unless I say they’re a problem. They are happy to try new things unless I’ve already tried them and decided to stop them. The only time I had issues was when Brompton stopped my meds as I ‘wasn’t asthmatic’ (as seen in asymptotic month) and they couldn’t give them to me until Brompton had seen how bad I was without during symptomatic months. They (and my local hosp) were very apologetic, irritated and worried during this time and give it all back to me as soon as they could!

Thanks - yes I started getting swollen lips and hives on xolair 🤦‍♀️. Thank you, feel better soon x

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

I am in London but not at Brompton - won't say where as I have been airing my frustrations on here and it can be read by anyone, even if I haven't used my name/specifics! They can be good but it's a mix - I didn't get on with Brompton, which I was sent to a few years ago when less bad and had a similar experience to your initial one.

I have been through quite a few clinics (mostly secondary not specialist) over the years partly with moving and partly with just not getting anywhere/being discharged so have felt like I need to stick with this one and see how it goes as they do have some positives. They are at least not telling me I'm just going to hospital for attention/am neurotic/just breathing badly! The asthma psych is really good so far so am kind of hoping that as I can talk to her without freezing (a habit I have with clinical people after so many bad experiences), I might be able to get things working better. And also hoping it helps me to build a better relationship with my GP - I do now live literally round the corner so it would be more convenient if nothing else lol!

[Mogget]

Hi, this sounds a little like me... I've been experiencing flares/one long flare since May this year (prior to May my asthma was mild and never really an issue). Despite needing to use my Ventolin almost every day my sats are good and I don't wheeze. I'm on Fostair 200/6, Spiriva and Montelukast. My lungs are constantly grumbling but not to the point where I need to be in hospital. I have however been getting some strong-ish attacks (for me) where I've needed to take my Ventolin 7+ times in order to get full breaths, and my chest takes a long time to open up again (back to its usual low-level tightness). I've been resting a lot these past months and taking it easy but it is frustrating as it affects your quality of life. Fingers crossed for you that you're able to get home nebs! It sounds like they may well benefit you.

I'm seeing my consultant again for the second time this Friday. Can you perhaps advise what sort of tests should I ask for? I have no idea what 'type' of asthma I have (other than knowing I have raised IgE levels to pollen). The only test I did in July was spirometry which came back as 113% (which the consultant said indicates above average lung function!) - yet I continue to have issues. Is it possible to have good spirometry despite having asthma..? I had taken my Ventolin a little while before the spirometry so perhaps that influenced the result?

[Lysistrata Administrator Community Ambassador in reply to Mogget]

Thanks! This does sound like me a few years ago actually so I sympathise - I actually prefer to have admissions but be better in between which I had for a bit - now I get a lot of these flares plus some admissions... The constant level is infuriating and I think it is seen as not important by some medical people because it's not acute. The good sats no wheeze is also very annoying because I can be in hospital with that so I know it's not reliable, but some drs are obsessed with it.

Sounds like someone gave you poor instructions before spirometry - you are supposed to not take it for at least 4 hours and then they are meant to do it before and after you have some to test reversibility. You might want to explain that to the consultant so you can get a better idea of what is actually going on. 113% means your best is better than predicted for age/sex/height which I also used to have - it's not uncommon especially if you play sports/sing/play or have played a wind or brass instrument. And you can absolutely be normal or better than normal if you are ok when you do the test, especially if that's after reliever. I know someone with severe asthma who can't work and she can still get better than her predicted best spirometry in good periods. (Mine doesn't behave like that now - it's just persistently rubbish, but my peak flow is still better than predicted much of the time which means I don't get believed sometimes. There is too much reliance on PF).

Have you had total IgE done as well? That can be useful in case they consider Xolair. They might want to do a challenge test as well (histamine or mannitol) - if they do that, make sure you look up the instructions for what medication to withhold, as they often don't get that right! They might also want to do something called FENO (fractional exhaled nitric oxide) - this shouldn't be used for diagnosis, but can be useful to see if you have a certain type of inflammation that responds to steroids.

Trying to think what else...this page may be useful. asthma.org.uk/advice/diagno... The AUK nurses are also very helpful if you want to chat things through before your appointment.

Hope this helps!

[Mogget in reply to Lysistrata]

This is really helpful - thank you for taking the time to reply so comprehensively!!

I never received any instructions prior to seeing the consultant and doing the spirometry (eye roll)... this Friday I will ensure I don't use my reliever beforehand! Hopefully they do the spirometry again, and as a reversibility test too.

I'm unsure whether I've had total IgE done - I shall enquire about that too, along with the challenge test and FENO test.

Have you ever been tried on a different preventer inhaler to the Fostair? I'm wondering whether to ask about that too, as I know there are so many different options.

[Lysistrata Administrator Community Ambassador in reply to Mogget]

Ugh they are useless with instructions! If you do get reversibility it may need to be done separately - if they do it, don't let whoever is doing the test stop if the first part is normal. This can happen if your actual best is more than predicted eg they get 80% and think that is fine but you would get the 12 or 15% increase indicating asthma if they carried on. Check about taking your Fostair that day too as it is reliever component (maybe check online too in case they get it wrong). Challenge test may depend on whether they think it isn't asthma - if they are willing to go ahead without it it's not essential.

I am on the Nexthaler, are you on that or the other one? I prefer it to Symbicort which I was on as the reliever element makes me less shaky and it is easier to inhale. There are a lot of new ones now so.worth asking about - some people like Flutiform. Fine particle csn be good though the Fostair Nexthaler is fine particle if you're on that. I am on Phyllocontin which Is theophylline tablets but most.cons hate that now.as it gives some people bad side effects. I love it lol as I don't get those.

[Mogget in reply to Lysistrata]

Thanks for the info! I called the consultant's secretary today and it turns out the consultant isn't planning to do any further lung function tests. Something to potentially argue for during the appointment. Though I guess the most important thing is getting me on the right mix of medication. I wonder what the consultant will recommend but I will also make my own list. Is the Nexthaler a dry powder? I'm not on that one - I use the MDI. However my Spiriva is a powder. Interesting about the theophylline.

It's a shame you're on so much but still experiencing symptoms! Are there any plans to test you on different preventer medications?

[Lysistrata Administrator Community Ambassador in reply to Mogget]

Hopefully the consultant has enough information! If s/he is not helpful based on the current information then you can argue for more tests - it sounds like you're going in well informed eg knowing your good spirometry doesn't mean no asthma, and may be worth mentioning you weren't aware that you had to stop any meds before the previous test. Did the one you saw last time seem helpful? If so you can ask at the desk usually to see them again - otherwise it can be pot luck who you get as it's first one to pick up your notes usually. May also help to write down any triggers you've noticed, any patterns in peak flow if you do that eg improvement after Ventolin, and improvement in symptoms with Ventolin.

The Nexthaler is a new type of dry powder with fine particles so you need less of it to get the same effect. My consultant loves it so no plans to change! I do find it easier than Symbicort which was the older type of dry powder inhaler. I found it hard to generate enough force to inhale it any time I was struggling at all so then it would spiral downwards ie I'd be struggling already and getting a lower dose! I think I am on everything else I can be on short of the new drugs that wouldn't work for me. Got my eye on an experimental drug that's meant to be good for my type of asthma but that will be a few years even if it does well and gets licensed.

[Mogget in reply to Lysistrata]

I felt the one I saw last time was semi-helpful, in that he was willing to prescribe me a new medication (Spiriva) to see if that would help. He did however seem to think my symptoms weren't as bad as I was making out because of the good spirometry, and was a little dismissive. I'm seeing him again on Friday. Thanks for the tips - I do indeed plan to write down triggers (although it seems to be anything & everything). I don't monitor my peak flow (though perhaps I should) but certainly notice improvement after Ventolin.

Your consultant may love it but as you're still symptomatic might it be worth trying other preventers you haven't already tried? Though I'm no expert and it sounds like you've now been dealing with all this for years so you've probably already tried all sorts! I may well ask about the Nexthaler. I sometimes wonder whether I react to the propellant in the MDI as I tend to get increased shortness of breath right after using it.

[Lysistrata Administrator Community Ambassador in reply to Mogget]

Ahh - maybe best to take pot luck then, you might get to see a better one! They do seem to find it hard to get their head round good spirometry - even if this is their issue because they didn't tell you about stopping meds. Naturally it is good after reliever! i would definitely show/mention any peak flow before and after readings. If you don't have any written down try doing a few before the appt.

I have indeed tried all sorts! My cons I think does not entirely subscribe to the view i have that medication response can be quite individual and I have had some differences of opinion with him over the Phyllocontin and montelukast (no I don't get side effects, and yes I know montelukast is not that useful for some ppl but it seems to vaguely help me!). He did agree in the end though. I think swapping one high dose combination inhaler for another would probably not do much tbh. At the moment I think I am just one of those people who lurks in the wasteland of 'we haven't caught up with the science and treatments yet'. I hope that you are one of the people who just finds it hard to get control but can get it eventually. It's rubbish being in limbo especially when you're not quite typical/don't fit some dr's ideas about asthma. Crossed fingers your appointment goes well but don't give up looking for answers if they're not helpful!

[Js706]

Ugh I know exactly what you mean! I’m also not allowed home nebs (although I do accept that this year I’ve probably been too unstable for them) and don’t really respond brilliantly to steroids - although I’m currently stuck on 35mg as maintenance!

I find that taking a couple of puffs of ventolin regularly throughout the day and then weaning myself down as I improve does tend to help a bit (as has been said), or at least keeps me a bit more stable so I can do a bit more than just mope in bed!

But its so frustrating being on the max therapy - I’m on xolair now and when I went for my injection last week I was mid flare (up until then I hadn’t been at admission point but couldn’t really do anything) and when asked what I had done I said I had upped my steroids (by a whopping 5mg!! as the current plan says to go to 40 and only my consultant can change it) and has stabilised myself overnight using 10 puffs of ventolin when I woke (consultant has said he’s happy for me to try 2 lots of this before heading in) and they responded “is that all?”. I was sat there like, well what else can I do? Nothing else can be increased!

[Lysistrata Administrator Community Ambassador in reply to Js706]

Ugh yes! They tell me to go home and do what I was doing...well cheers? neb for the road at least! Frustrating when you can't do much - I have this gap between what I can do at home that helps and what I can reasonably be offered if I actually saw anyone, which I think would be quite neatly filled by the mythical unicorn that is a home neb...

I do rather feel like I'm just being left to my own devices and they're not really interested in hearing about what's changed, but maybe I'm just being grumpy. I know there's only so much they can do atm so maybe I'm just frustrated with that, but it would be nice to feel I can say 'look this is happening, I'm not worried but it seems different, any thoughts or advice'? I feel like they keep forgetting I am actually a different type of asthmatic entirely (ie a freak) and saying oh good when my eosinophils are normal! grrr...sorry more ranting.

How is the Xolair working out for you? I remember it took a while to get on it - is it helping at all?

[Js706 in reply to Lysistrata]

Yeah it’s very annoying! I’m also kind of hoping I might be allowed the mythical home neb with rules once I’ve stabilised some more.

I also get similar comments re eosinophils - and then I remind them that a, I’m on stupid doses of steroids and b, they’ve never been high! Same with me having reduced air entry rather than a wheeze - last week I was in and the reg came to review me and wasn’t going to prescribe anything extra having listened only to the front and top of my chest, until the junior pointed out I had no air movement at all in my lung bases! On checking this he immediately decided to start aminophylline 😂

Fingers crossed the xolair *seems* to be helping a little. 9 weeks in and they said it took 12 to reach maximum levels. Certainly the daily symptoms don’t seem to be as bad (although this is normally my best time of year) and the admission last week was a bit mis-managed and I was only getting very sporadic nebs so not really stabilising. Cue a massive deterioration in the middle of the night! (Hence the aminophylline!) but normally if I hit that point I end up on hdu or with outreach coming to see me at least but I didn’t need any of that! So fingers crossed!!

[Lysistrata Administrator Community Ambassador in reply to Js706]

I am just the same with air entry and no wheeze!! very difficult in hospital as it is - I feel I shouldn't have to remind asthma nurse who is meant to know me that I don't wheeze every time she says 'no wheeze, that's good'. I wouldn't necessarily have reduced air entry in a moderate flare in clinic but also wouldn't wheeze - it doesn't mean much if I'm not.

Glad it seems to be helping - sounds encouraging but frustrating when they don't manage things well. I get very fed up with how it can seem to be going ok then someone new comes and it all goes south. Hope the Xolair keeps helping! ANd crossing fingers for the home nebs...I don't usually envy Americans with their crazy system but they do seem to have them more over there.

[gandac]

This may not be approproate for you but for my little flares I go a walk. This doesn't have to be fast or far but for me generally sorts the problem quite quickly.

[Lysistrata Administrator Community Ambassador in reply to gandac]

Thanks! Glad you found a solution sadly I tend not to be able to move much in the middle of mine and if I get a bit better and try venturing off my seat it all comes back again grrr.

[mackro]

I have experienced the same early this year. It took while to get the right doses and correct therapies. While searching for the right combination I did some light exercise, installed air purifier and removed new things which I have recently introduced like air freshner, window curtains, etc. I even switched the bath soap from antibacterial type to ordinary solid version. Slowly it worked.

[Lysistrata Administrator Community Ambassador in reply to mackro]

Thanks - yes my lungs violently dislike air freshener so I imagine it would help to get rid of it! Also some hand soaps though usually because they have things like rose or lavender in them which lungs also don't like. It's always tricky working out triggers isn't it, especially if the effect isn't immediate! Glad it's working for you.

[mackro in reply to Lysistrata]

I can say with confident now that the air freshener and antibacterial soap are the culprits. My asthma was well under controlled until March this year. The first lung specialist which I consulted was quite puzzled because non of the prescriptions worked. Pred, new inhaler and two rounds of antibiotics failed to stop the coughing and phlegm. I have left with no choice but to consult another chest physician who asked me very simple question on my first visit - what did I do to my house recently. Quickly I remembered the air freshener and the antibacterial soap. He asked me get rid both which I immediately complied. After few 1-2 weeks, I can feel the different. Now I'm almost 100% normal. As in your case, I'm sure something is bothering your lung. Something very obvious but yet took few weeks to discover as in my case. Good luck!

[Lysistrata Administrator Community Ambassador in reply to mackro]

Thanks! Glad you found the culprits.

I know what a lot of my triggers are, but they are very hard to avoid it seems. Eg weather changes really set me off, as do random encounters with scents, smoke etc. I do as much as I can to avoid them eg asked work to change the spray air freshener to gel, avoiding scents ans smoke where I can, using roll on etc but I still get caught by triggers lot and sometimes there is no obvious culprit!

[mackro in reply to Lysistrata]

Have you tried breathing exercise like jogging or threadmill? It helps clear the lung in my case. I always feel better after every light PE session.

[Lysistrata Administrator Community Ambassador in reply to mackro]

I exercise where I can when lungs are behaving better and try to build that in every day - works well to and from work. At the time of a flare I cannot move at all really and my exercise tolerance is hugely reduced afterwards - I have to be careful then as I will get worse if I do much at all in that state - even a very slow walk inside can undo the ventolin! But I am careful to keep active as much as possible when I can.

[mackro in reply to Lysistrata]

Have you tried brochodilator like theophylline plus preventer like seretide or symbicort or flurotisome?

[Lysistrata Administrator Community Ambassador in reply to mackro]

Already on max strength combination inhaler (Fostair Nexthaler) and theophylline plus montekulast and Spiriva Respimat! Bit of a standstill with meds - they wanted to try mepolizumab but I never have eosinophils - clearly wrong sort of asthma!

[mackro in reply to Lysistrata]

Probably you need a long term steriod control. Regardless, consult your GP first.

[Lysistrata Administrator Community Ambassador in reply to mackro]

Thanks. I was on long term steroids for a while but the current consultant got me off them. My steroid need seems to be covered by the inhaler- the rest is apparently due to an inflammatory process that is not responsive to steroids or other currently available drugs. Part of the reason I posted aking about these flares is that they can't be blasted with steroids which is the usual approach! I don't miss the side effects but it is frustrating to lack the option.

[mackro in reply to Lysistrata]

I remembered my consultant mentioned about surgical inteference as of last resort. Don't quite remember the exact name of the procedure. Though I still feel that the oral treatment is the best, however, you may want to discuss this option with your physician. All the best and good luck.

[johnsmith]

Flare ups could be due to muscle control problems. This is an area that consultants seem to know nothing about. Drugs cannot do anything about a muscle control problem. The brain has to engage in not engaging in poor muscle technique and replace it with more efficient and effective muscle movement.

A McTimony chiropractor can do something about over tight chest muscles. An Alexander teacher can help you see how you contribute to incorrect muscle tension and muscle movement and help you replace it with better muscle movement.

[Lysistrata Administrator Community Ambassador in reply to johnsmith]

Thanks for taking the time to reply. I did in fact see a chiropractor a few years ago at my mother's suggestion - gave it a go for a number of sessions to keep an open mind but I can't say it helped. My flares can be very sudden so while any muscle tightness may not help I would think it is the underlying airway issues that are the main issue there. I have also seen an Alexander teacher for a while as I did a lot of singing (in choirs, not solo) - I think it was certainly helpful voicewise and I know professional musicians can find it very helpful but again, has not really done much for the asthma side of things.

[johnsmith in reply to Lysistrata]

Thanks for the reply.

You say: " it is the underlying airway issues that are the main issue there". You are right. However, anything that prevents system overload or makes one more aware of prevention of poor muscle control will reduce the severity of attack.

There is an underlying problem. There are things which can reduce the stress of the underlying problem. Often it is not about cure but about reducing the effects of the disability. It is about learning to prevent the positive feedback loops that a condition generates.

I have a chronic condition. I have chiropractic treatment for it. I have to have continual repeat treatments. What I have cannot be cured it can only be managed. The chronic condition produces a feedback loop which effects the muscles. The chiropractic treatment undoes some of the muscle tightness and the whole cycle starts again.

Feedback loops means that a particular physical treatment may not work for all time. The physical treatment requires repeating at regular time intervals to help manage a condition.

Not sure if I have explained this very well.

[Lysistrata Administrator Community Ambassador in reply to johnsmith]

I see what you're saying, and I'm glad you've found it's helped you. However, I didn't find even at the time that the chiropractic treatments or Alexander lessons I had made any difference to my asthma at all. I can see that if something helps initially it may need periodic 'top-ups', but it didn't help initially so I didn't pursue it. With breathing exercises, I found that occasional reminders were useful so I can see the logic - those haven't helped my asthma much but have kept me from making it worse with bad patterns.

[Matman]

General and Muscle Tension resulting from the stress and anxiety of Asthma can contribute to symptom intensity. Likewise, single drug side-effects (or drug interactions) can add to the overall symptom-burden (Drugs.com is great for checking Drug Side-Effects and Interactions).

An example of an over the counter possibility to combat such stress / anxiety (and ‘maybe’ relax your lungs a little) is: Kalms (valarium-based, I think). It’s sold by Boots and other Pharmacies - but is not, as far as I’m aware - required to have a pharmaceutical licence, which (personal opinion only) brings safety into question - though I’ve used Kalms in the past without issue. However, they may not play nicely with other meds, or might risk triggering an allergic reaction flare-up, so may want to check with Pharmacist / GP. But really, any form of non toxic relaxant (excluding booze, which is also a stimulant) may prove useful. Maybe one that a Doc can recommend. I’m much better at night between taking my sleeping pill and falling asleep, as the drug obviously relaxes my entire system, including my twitchy lungs.

A non-drug possibility (with or without a companion bio-feedback device) is various meditation / relaxation programs. Yeah, I know it sounds a bit whacky / hippy, but such techniques can often help significantly get some folk through minor bad-patches, even if by just helping them gain some extra quality ‘rest’ for twenty minutes or so, twice a day. (Many asthmatics are always over-tired due to lack of sleep, constant low-level anxiety, or permanently elevated stress levels - not helped by spending half their waking life consulting Dr Google about their condition, then worrying about what they learn.

When first trying one of the techniques alluded to above, some folk like reassurance that the technique they are employing is ‘really’ helping, i.e. by seeing proof - while they practice - that their current brain waves are changing to more beneficial relaxing / creative ones, which is where a Bio-feedback monitor ‘may’ help (as such devices purport to indicate which predominant brain waves are present while the ‘chosen technique’ is being practiced, thus offering proof - of sorts - that the ‘technique’ being practiced is working).

Even some herbal teas (used to great effect for centuries in certain cultures) may offer some minor relief from symptoms. They might not turn you into a Tibetan Monk / Nun, but may provide a little respite. Green Tea a Choc Digestive anyone?

[Lysistrata Administrator Community Ambassador in reply to Matman]

HI, thanks for taking the time for a response. I appreciate what you're saying and glad you've found things that help, but don't think stress/anxiety are really what's doing this in my case. My lungs for some odd reason appear to actually thrive if I am stressed - the weirdos. I'm also not someone who gets anxious about breathing difficulties etc. Dealing with the medical profession definitely makes me stressed but it doesn't make me short of breath - I only get SOB with doctors if I was already significantly that way and therefore needing medical assistance! I did try Kalms once before an appointment but it made me feel sick, which didn't improve the experience. Throwing up on the consultant could have been amusing mind you... My drugs are generally either for asthma or could be for asthma (hydrocortisone for adrenal insufficiency). The interactions they have appear to be tachycardia (though if they work = asthma behaves = heart behaves) and low potassium (somehow, mine is always within range which is amazing with my meds. Maybe it's all the dark chocolate.)

I did try a biofeedback thing for breathing once and can't say it massively helped. Also seen a million physios and done Buteyko - yes, asthmatics do get into bad habits and I had a couple of those. It fixed those habits, which were mechanical rather than stress, but otherwise hasn't done much - I still use the techniques just in case.

I'll admit I am wary of herbal teas - lungs have made it fairly clear to me that they don't like a lot of 'natural' things (cold weather, hot weather, damp weather, humid weather, steam, assorted flowers and herbs, mangoes...) so anything with a hint of being herbal is now 'approach with caution' because I am never sure what's lurking in there and when they'll decide to take against something new. The mangoes appear to be a relatively new thing - lucky I don't like them!

I have bought a heater for my room as I agree that crappy sleep doesn't help and a cold room wasn't helping - though the lungs themselves are not really helping with that.