Chest Clinic

[Lilmix03]

My GP/ Asthma Nurse has referred me to the Chest Clinic at the hospital because my scores at my last asthma check-up were pretty low, and I've got my appointment on Wednesday, but I'm not sure what I should mention. I get frequent flare-ups and chest infections- flare-ups probably between every 4-6 weeks, and chest infections maybe every couple of months. I'm on Montelukast, Carbocisteine, Spiriva, Flutiform, and Ventolin, as well as having Ipatropium and Salbutamol Nebulisers. My asthma nurse suggested changing my steroid inhaler to Fostair, but she was hesitant in case it made my asthma worse. Is there anything that I could ask or bring up that is worth mentioning

[Bevvy]

Mention everything you have told us. Suggest you put each point into bullet points and refer to them. Otherwise you run the risk of missing out information that would be helpful for doctor to know.

Hope your appointment goes well.

[Homely2 Administrator]

Ring asthma UK helpline and talk to a nurse there, it will help you think through what you want to say and ask beforehand

[Lysistrata Administrator Community Ambassador in reply to Homely2]

I agree with this - it's really helpful to talk everything through with the ALUK nurses beforehand. 0300 2225800 or WhatsApp [phone] Monday-Friday 0915-5pm and option 3 for nurses (I think!)

Advice I can give, but am bad at following, is that this should be a dialogue: they are respiratory specialists, but they don't know everything about you and your body, and they may not have the full picture as NHS communication can be patchy. It's worth telling them everything and emphasising what you think is important, even if they should already have the notes (they may not, or they may not have the full picture). You shouldn't feel like you can't ask something, or push back and ask questions if you don't understand why they're saying something or recommending a particular treatment for you.

You may also find this post helpful: healthunlocked.com/asthmauk... It's more geared towards specialist asthma clinics than local general respiratory clinics (they are different!) but may still be helpful.

[Birthday60]

Try asking why you are getting chest infections and is there anything you can do to reduce the risk. What can you do to improve your resilience and lung health rather than adding to your drug regime -

[SuziElley]

mention everything, write it down so you don’t forget anything. Take all your medications with you as well.

[Hidden]

You poor thing I really feel for you xxxx that's really bad.

My respiratory nurse, told me that medication causes symptoms, and need to find the cause, not treat the flare.

Sorry I'm not sure what all the medication is. But are you on stomach tablets, gaviscon ,milk anti histamines?

[Lysistrata Administrator Community Ambassador in reply to Hidden]

Hi, I appreciate you're talking about your own experience here, but just wanted to add for others reading that medication absolutely can have side effects and those can be really problematic for some people.

However, it's not the case for everyone that the medication will cause more symptoms than it solves. And asthma flares can be dangerous - they still need treatment, even if finding a cause can also be helpful. There won't necessarily be an obvious one for everyone though, nor will the same treatments work for everyone even if it did for you.

Just in case anyone is considering it, please don't stop your medication because you think it's causing your symptoms. Only stop medication carefully, with good medical supervision. In case anyone is wondering, because it does happen, being told to stop all your medication immediately by a healthcare professional who doesn't understand asthma is not a good idea either. (I'm not saying that's the case with your nurse, naturesky!).

[Hidden in reply to Lysistrata]

I'm still not cured no . But in 4 years, I can actually move,lie in bed, stand without an attack..I had an attack ystdy and already been on steroids this year . In decades it's never been controlled when I thought it was.. Finally get speaking to someone clued up on asthma. So I'm going to share her wisdom and advice.

But, No that's not what the respiratory nurse told me to do. Not to stop dead, obv it's dangerous with asthma well more so severe asthma.

She said that high doses of medication, is not the best or advisable, even asthma UK will even tell you, that, there comes a point when medication no longer works. They suggest 10 puffs of ventolin during an asthma attack, as beyond that point it no longer can do anything.tbh it's probably even before then.

I'm aware everyone is different, never suggested anyone stop medication, neither did the actual experts. All medication,has side effects, yes some may notice them when others don't, and yes everyone has different reactions to things.

That was not the point made, medication can only treat so much. If it's not working then obviously other things need done and investigated.

Unfortunately, many here or in general will not find a good , clued up expert, instead what happens is more& more medication is given & increased dosage. This is what I was saying, this is when the respiratory nurse the only 1, told me that medication can be counterproductive, and cause it's own problems. Especially with acid reflux gerd.

She is I believe an expert and done this job countless years & helped many this isn't just MY experience, she is the only 1 that has actually helped and not make me take increase doses and new added medication. Gradually cut me down 1 steroid inhaler, as everyone aware I was on severly high dose and countless ventolin. The safe maximum was 4,I was on 8 and more when bad which every few weeks month if lucky..

But

I have been advised by Asthma uk & respiratory team, that medication can only do so much, and can be counterproductive. Acid reflux, gerd causes huge problems with asthma and medication can does effect it.

I would like to think everyone knows they need their medication and not just stop it without asking first. As said, the problem is finding someone that is clued up and can think outside the box of increasing and given more medication, without first ruling out other possible reasons for asthma attacks.

As for flares, aka attacks, yes of course they are dangerous.. horrific things. It's finding right course of treatment, without having to be debilitated and on oxygen tanks.. no one should have to suffer them. But as above, no one investigates to get right treatment. Immune irritation inflamed attack.

I like to hope everyone has been investigated for all allergies, GERD and on appropriate medication to help, and yes milk is a good thing to help with this. As well as those needed stomach tablets and yucky gaviscon.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I'm glad you've found someone to help who seems clued up and that you're doing better. And as I said - I appreciate that your nurse wasn't saying to stop everything immediately, and nor were you.

However, people can read things differently and I felt there were ways people might read your first reply that I needed to make clear to others reading this thread, even though that wasn't what you meant. I agree with what you're saying about trying to prevent asthma flares as much as possible instead of just fire-fighting every time. But your first reply could read as if you were saying asthma flares don't need treatment - even though you weren't saying that.

Some people may also - and I have seen people on here being told this - be told to stop treatments they shouldn't be stopping, or stop them in a way that's unsafe, because a professional has a mistaken idea about what the cause is or thinks something isn't asthma. I'm glad no one has told you to do that, but it was something I wanted to add on. Even if your nurse is clued up, as you're aware, not all healthcare professionals are when it comes to asthma - and they can get fixed ideas about causes which may not be correct, and try to reduce or take away medication people do actually need and that is helping them. (Again - not your nurse, just a general comment).

Your experience may well be helpful to others, and I agree that it's definitely possible and does happen as it has for you, that people are on the wrong medication for them, or have had doses increased of a medication that doesn't help them and they need to have it all reconsidered. I don't really respond to oral steroids, so I'm definitely glad to be off them, but others I know rely on them because they don't currently have a better alternative to keep their asthma somewhat under control. And these are people who do have generally good asthma teams and have been investigated for things including GERD and other causes and triggers (not just allergies, since not all asthma is allergic).

Some people are eligible for newer targeted treatments - and those actually require other causes for symptoms to be ruled out first. They want to be fairly sure that the asthma symptoms are asthma and that it's caused by what the medication is targeting, as these are expensive drugs that don't help everyone and aren't good to take if they're not likely to help.

For others, like me, the symptoms can still be asthma, but it may be a type that can't be easily treated with targeted medications.

GERD treatment can definitely be helpful, as you've found, but it isn't the magic bullet for everyone and may not help some people that much, even when different treatments have been tried. There is research to show both that it's helpful to identify what else is going on alongside asthma and treat it, but also that it's not the whole picture. Even when these other things have been treated, some people like you will be much better, and others will be happy to have less GERD or runny nose, but still have severe poorly controlled asthma to deal with.

Hope this helps explain what I'm saying. It's helpful to share your experience. However, some posts can be read more than one way, and even if you're just talking about your experience, it can end up being read as 'I should do this', especially if people are desperate for solutions.

[Mijmijkey74]

Have you not been offered biological injections? Maybe you don't meet set criteria for them. Though you certainly read out as if you could benefit from them. x

[Lilmix03 in reply to Mijmijkey74]

Nope, my specialist suggested step down treatment because he doesn't believe that I actually have asthma for some odd reason

[Mijmijkey74 in reply to Lilmix03]

Oh gosh that doesn't sound right, but I'm no specialist though sometimes when talking with them I do privately question just how specialised they are when I'm having to fill them about various things they really should as specialists already know. Perhaps you come across the same at times?Have to ask if you do personally feel that you do have asthma?

[Lilmix03 in reply to Mijmijkey74]

Definitely have had to explain myself more than once. I personally think I have Asthma, I've been diagnosed since a young age and it's always responded to Inhalers. I did go through a period where it was hard to control but they put me on Spirivia and montelukast and it settled

[Mijmijkey74 in reply to Lilmix03]

At least I'm not alone in having to do that at times also. very condescending/patronising attitudes I unfortunately come across with fixed ideas, outdated knowledge and closed minds to alternative ideas/thinking.It makes sense your specialist suggesting step down treatment in order to see how your asthma responds/reacts to that, but for the specialist to believe after all this time since you were a young age of you being treated for asthma and it responding to inhalers to now believe you don't even have asthma is really (as you say) odd. I believe we know ourselves if we are or are not asthmatic after significant years of ourselves (not them) living with it and dealing with it best we can. Has the specialist then offer up another explanation to counteract your belief that you are asthmatic?

I had one very odd senior doctor stop all my inhalers telling me I didn't have copd. I told her she was nuts and that I knew already I didn't have copd as I at the time was diagnosed with brittle asthma. Same thing she said. You don't have it. I'm stopping all your inhalers, you don't need them, you use them to much and you have caused your own copd from over using your inhalers, you caused your own coma due to your misuse of them, you have mental health issues not copd. I told her she was nuts, could she make up her mind, that she was the one with mental health issues and how dare she tell me I over used them and caused my own coma when it was known I was critically ill anyway unrelated to inhaler/copd or asthma but a unknown virus that caused my massive asthma attack. I told my gp about her, she was fuming and made it very clear she was not allowing anyone to stop my inhalers and not to listen to any of what that senior doctor had said and to raise a complaint about her. I did and I also had everything awful and blaming she said to me in her office on a recording as I record all consultations for my own benefit and protection against liars like her. She was trying to deny everything when I raised complaint, but then when she was further informed that I had proof of all she said (as other things were done as well as said by her that she fabricated) she very quickly backtracked and changed her tune, tone and mind. I received apology and she was made to undo in front of me the lies she had written. Oh how angrily she scribbled it all out. I wish you good luck and hope you are eventually very soon fully heard. x