Newly diagnosed with asthma - need help! - Asthma Community ...

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Newly diagnosed with asthma - need help!

Mandevilla profile image
20 Replies

I have been suffering with breathing difficulties for 2 years, following a severe chest infection. My breathing never got back to normal. I've tried to get help from the GP several times, but was told for the first year that 'it takes time to recover from chest infections' and in the second year that my breathlessness was 'due to stress about Covid'.

A month ago, I finally got a face-to-face with a GP who actually listened to my symptoms, did a peak flow test and said 'I think you have asthma'. She sent me for some bloods & x-rays, told me to record my peak flow for a month and then bring the record back to my next appointment so they could confirm diagnosis. But by that point, Omicron meant no face-to-face appointments. I had a two-minute phone call from a different GP who said 'based on your medical records & test results I'm diagnosing asthma and prescribing a preventative inhaler which you can pick up from the pharmacy tomorrow. We'll see you in 4 or 5 months time to see how you're doing'. And that's been it. (I got given a reliever inhaler by the first GP, just to see if it helped - it did - so I have that too)

I know literally NOTHING about asthma. I have three main concerns.

1) I have an outdoor job. The first GP to mention asthma told me I should avoid being out in very cold, rainy or foggy weather (I really struggle to breathe in rain or fog), and when I told her about my job, she said once diagnosis was confirmed, I'd be able to discuss what impact it might have on my ability to do the job - obviously, now that's not possible, and I have no idea if I should keep working as normal, if I need to make any changes or even if I need to look for a new job that's indoors.

2) Linked to that - everything I read keeps talking about contacting your GP if your asthma is not 'under control' and also about monitoring peak flow and either going to the GP or to hospital if it drops 'below normal'. How do I know if it's under control or not? How bad do I have to be to need to call the surgery and when is it bad enough that I should go to A&E? I don't want to cause any hassle when the NHS is already so overwhelmed, but it's scary struggling to breathe and not knowing how much worse it's going to get.

3) How long does the maintenance inhaler take to work? The GP said I shouldn't have to use the reliever much, if at all, once I had the maintenance one, but the leaflet with the maintenance one said it would take a while to take effect. And I'm having to use the reliever the maximum amount because of the weather - when should this ease off?

20 Replies
Troilus profile image
Troilus

Medics seem to do this a lot Mandevilla - stick a label on our heads but don’t give us the information we need to manage our conditions.I will try my best to answer your questions, but a good starting point is to visit the main asthma U.K. website. There you will find all kinds of useful information and I’m sure someone will come along and post links to other useful posts.

I was first diagnosed 3 years ago, am under the care of a respiratory clinic, and also have yearly reviews with the asthma nurse at my local surgery and still have not got an action plan!

So, an action plan works on a traffic light system based on your peak flow.

Green zone is over 80% of your personal best ( your highest reading)

High Yellow zone is between 65 and 80% of personal best

Low Yellow zone is 50% to 65% of pb

Red zone is below 50%

In an action plan you have instructions about what to do in each category.

Now, when I first started taking peak flow, this wouldn’t have been much use to me as my peak flow was much lower. I remember when I was on holiday and I got a new pb. This meant that to be in the green I would have to blow 270 each day and I thought this would be impossible. However, now, I can blow 420.

I suppose what I am trying to say, is that an action plan based on early readings isn’t much good. It could mean that you are working on levels that are too low.

I think at this stage in your journey you are much better working off your symptoms. Still take your peak flow, but when it comes to management symptoms are probably the way to go.

Now, talking of symptoms, you are still experiencing breathlessness and are using your blue inhaler to counteract this. Keep a note of many times a day you need your blue inhaler and when you need to use it.

Give your surgery a ring and ask an appointment with the asthma nurse or your GP. A telephone appointment would do, but don’t be put off. Tell the receptionist your asthma is playing up. Explain to whoever that you are experiencing breathlessness and that you are having to use your blue inhaler x number of times a day.

A preventer inhaler typically takes 6 weeks to fully kick in, but it can take longer than that to reduce the inflammation in the airways. However, there are lots of different types and different doses. It might be that you need a higher strength preventer.

The idea in asthma management is to step up treatment until maximum control is reached.

There are also a number of different medications that can be thrown into the mix to achieve that.

As for weather conditions affecting your breathing, this is not uncommon. Covering your mouth with a scarf or ( or face mask in these times) might be helpful. You might also want to try taking a couple of puffs of your blue inhaler before you go outdoors and again 4 hours later as an interim measure until you get to see someone at your surgery.

Hope this has been helpful and not confusing😁

Mandevilla profile image
Mandevilla in reply to Troilus

Thanks for this. I've just spoken to the GP via phone again because I was feeling so much worse after using the maintenance inhaler.

Turns out it contains something that was a trigger for me (and a trigger they already knew about when they prescribed it...sigh!) Spoke to a different GP other than the one who prescribed it, and he was 'oh, I'm not surprised it's making you worse'...🙄

So he's prescribed a different (hopefully trigger-free) one as an emergency prescription which I should be able to get later today. So would it make sense to monitor how I do with this for 6 weeks and ring them again at the end if there is no improvement (obviously, I'll be ringing asap if it makes me worse).

Can't help thinking it would make it easier if I spoke to the same GP each time, but so far, it's been a different one every time. Oh well, I guess at some point I'll have spoken to them all

😄

Poobah profile image
Poobah in reply to Mandevilla

Welcome to the club Mandevilla.

Ideally, a diagnosis of asthma should be followed by primary treatment with regular reviews with an asthma nurse or GP. Just throwing a prescription at someone and saying I'll see you in 6 months time is dreadful. The primary reviews are necessary to establish whether or not the primary medications are suitably effective and if not, to try a different med or meds and dosage until the asthma symptoms are under control.

An asthma nurse is attached to the GP surgery and has undergone specific training but they cannot issue prescriptions but will recommend meds which are then prescribed by the GP. Whether you see a GP or asthma nurse, they should follow the Asthma Stepwise Management plan issued by NICE. This means that treatment is gradually increased until symptoms are controlled and then maintained. It recommends different meds or a combination of meds at each stage. You can Google the Stepwise guide for your own reference.

If you have been prescribed a preventer inhaler then this can take up to 8 weeks to have full effect and at stage you should have at least a telephone appointment with an asthma nurse or GP in order to review how things are so that any changes in dose or inhaler can be made. We are all different and respond differently to every inhaler, meaning that sometimes it's a matter of trialing different inhalers until you find the right one for you and your asthma.

Asthma is an umberella term and there are various types of asthma, that are identified though tests carried out by specialist respiratory clinics at hospital. Referral will depend on whether or not your GP can manage your asthma using Stepwise (which includes trigger points for a referral to a specialist).

It sounds like you will need to take control of your appointments and reviews by making regular appointments until you're satisfied that your treatment is successful - don't wait for your GP surgery to take the initiative. And if symptoms get worse never hesitate to seek medical help through the GP, 111 service or A&E. Always assert your expectations.

You can also discuss your diagnosis and treatment with Asthma UK who have excellent nurses. Details are under "contact" on their website.

It's a steep learning curve and one that happens when you're feeling less than ready because you feel so unwell and probably overwhelmed, but you always have this forum for any concerns or questions, no matter how many or how daft you think they are.

I'm glad you took the initiative and got a more appropriate prescription. Definitely arrange a follow-up appointment with the GP or asthma nurse whether or not things are going well. And ask about a regular review with an asthma nurse - it's not only good practice but recommended. The AN will discuss an asthma plan of treatment and action to take if symptoms worsen. This is reviewed annually or when symptoms dictate.

All the best.

Lysistrata profile image
LysistrataAdministrator in reply to Poobah

Just wanted to add here that I suspect a lot of GP nurses who are designated as asthma nurses do not, in fact, get much if any training in asthma. My surgery used to get the HCA to do asthma reviews! They should be trained yes, and my childhood ones were, but this isn't always the case.

Poobah profile image
Poobah in reply to Lysistrata

I must admit that I was on the verge of changing GP practice in order to get better asthma treatment and then I was referred to a specific asthma nurse at the surgery. She's very good and has really helped me get back on track. I would definitely seek out a good AN service and change practice, if necessary.

Lysistrata profile image
LysistrataAdministrator in reply to Poobah

I'm glad to say that my practice seems to have changed their habits - they now invite me to reviews with the pharmacist or an actual nurse, as they should (and they've only just got round to inviting me in the last year or two). I haven't actually made it to any due to COVID and lack of chasing on my part, so I don't know if the nurse is properly trained in asthma or not, but hopefully she is - they need someone who knows their stuff!

Personally I haven't really put in the effort with the GP nurse, as in the past they tend to find me too weird/difficult to handle (lungwise not personally lol) and pass the buck to the hospital where they have specialist nurses available - with varying levels of expertise and helpfulness. I'd definitely agree with you though, and emphasis to Mandevilla, that it's worth trying to find someone who knows their stuff with asthma, is accessible (which will be the GP AN for most) and is willing to listen, not just spout standardised information.

Mandevilla profile image
Mandevilla in reply to Poobah

I'm reluctant to change practice as we're in a rural location- my current GP is 5 minutes walk, but the next nearest one would take about half an hour by car and much longer by public transport! I've found the nurses very helpful for other issues in the past, so I'll see how they are on asthma.

Poobah profile image
Poobah in reply to Mandevilla

Very wise given your options. Take care and keep us posted how you get on with your new inhaler.

Darceydoo profile image
Darceydoo in reply to Mandevilla

Hi I’d ask if there is a nurse who specifically deals with lung conditions. Also check there website it should tell you names of medical staff that is trained in lung conditions.

Mandevilla profile image
Mandevilla in reply to Darceydoo

Check the website? Haha! It has surgery contact details and the names of the two partner doctors, and that's about it!!! 😆

Itswonderful profile image
Itswonderful in reply to Lysistrata

I agree. I have been given wrong advice by an asthma nurse. I checked with my consultant if I could take an extra puff of my preventative inhaler as the nurse had advised and he said I should not do that. I am not too sure what the annual asthma review with the nurse at the GP surgery achieves a lot of the time. I have wondered if it ticks a few boxes for the surgery ? I’m not saying do not attend the asthma reviews as they can be a chance to ask questions but if something doesn’t sound right, don’t be afraid to ask more questions.

Troilus profile image
Troilus in reply to Mandevilla

So pleased you are getting sorted out.

Mandevilla profile image
Mandevilla

Thank you both for your advice - it's been really helpful, and also so encouraging as I don't feel so isolated trying to tackle this. I will definitely make a note to ring the surgery again, once I've had time to see how I do with the new inhaler. I think half the problem is that, by speaking to a different doctor each time, each one assumes one of the others has told me something or dealt with something already! Still, at least this surgery has found me a diagnosis instead of fobbing me off with offers of anti-depressants for 'Covid related stress' like the last one did.

Must admit I'm feeling a bit nervous about trying the new inhaler tonight as I'm feeling really rough after inhaling the last one! But I'm hoping that they will at least have checked this time that the new one doesn't contain any known triggers, which gives me a slightly increased chance of this one being helpful!

Poobah profile image
Poobah in reply to Mandevilla

When you go and pick up the new prescription you can have a chat with the pharmacist about your concerns. They should be able to reassure you that the new inhalers are free of known triggers.

Mandevilla profile image
Mandevilla in reply to Poobah

Thanks for that advice. The pharmacist was really helpful and reassuring. Just used the new inhaler for the first time, and I think it's ok. I could feel my chest tightening up before I used it, but I know that was stress about trying it. It's already eased off, whereas the previous type left me feeling rough for hours, even after using the reliever. Only time will tell if it's going to be helpful, but at least it doesn't seem to be making me worse!

Darceydoo profile image
Darceydoo in reply to Mandevilla

Depending on your inhaler there are spacers which help also especially if you’re struggling to get it deep into your lungs.

Itswonderful profile image
Itswonderful in reply to Poobah

Good idea.

Lysistrata profile image
LysistrataAdministrator

Hi Mandevilla and welcome!

I'll try not to repeat what others have said here as I mostly agree. However, I wanted to add a couple of points, including links to some helpful posts:

These posts are for newly diagnosed people with asthma - some hints and tips:

healthunlocked.com/asthmauk...

healthunlocked.com/asthmauk...

This post outlines what to do when (eg when to take your reliever, when to go to A&E etc): healthunlocked.com/asthmauk...

This AUK page also helps on how to determine what to do and when to know if your asthma's getting worse: asthma.org.uk/advice/manage...

With action plans, they should really be both symptom and peak flow based - at first definitely, but even after that, once you have a stable personal best, people vary in how useful their peak flow is. Asthma UK advises that you shouldn't ignore your symptoms, even if your peak flow looks not too bad: asthma.org.uk/advice/manage...

On the topic of peak flow, this post will be helpful as it tells you the reality, and why yours might not fit neatly into any little 'average' box they like to use. They key thing with peak flow is to compare with yourself, not anyone else: healthunlocked.com/asthmauk...

Finally - you'll probably find it helpful to give the Asthma UK nurses a call if you haven't already, especially since your GP surgery haven't been that helpful! They are focused on asthma and have more time and expertise to offer. You can reach them on 0300 2225800 M-F 9-5 or WhatsApp - 07378 606728.

Hope this helps! Feel free to ask questions on here too as you have been :)

Dizzart profile image
Dizzart

I was a gardener full time and like you with asthma and lazy gps but I did insist on trying prescription antihistamines and Montelukast . They both help enormously, but I learned everything from here and then pushed hard for what I needed. Use the BLF as leaverage, say the experts on the lung foundation say this ............. etc . Good luck , kick hard 👍🏻👍🏻

Deverdad profile image
Deverdad

Hi. I won’t repeat any of the already good advice given, just wanted to say when I was first diagnosed (at 60) I was in denial to be honest and it took me some time to come to terms with asthma and everything that goes with it. It does get easier once you reach a “control” level but it takes time - good luck and best wishes, Colin.

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