Still struggling with unstable asthma

[bookdaft]

The fight with my unstable asthma continues. I finished another short course of prednisolone last Saturday and on Sunday evening I had a scary episode lasting a few hours where I felt I couldn't get a full breath. It was like I was wearing a really tight top, I went for a walk, 10 minute stroll really, with the dogs and could hardly speak at the end of it. I contacted my GP again and she is trying to avoid going down the route of further steroids or the looming threat of long term steroids. Instead she asked me to use my ventolin 4 times a day for the next 5 days. I'm a few days in now and it seems to have helped. Can anyone tell me the thinking behind this? I'm just wondering if this is something I could try again if the symptoms start creeping back. I feel like it's almost inevitable at this point and I really don't want to end up on long term steroids, the side effects scare me.

[Troilus]

I always usually my Ventolin as soon as I start to experience symptoms, to stop it from getting worse.

Ventolin will open up your airways and keeps them open for about 4 hours, hence you GP’s instructions.

If you need to take another dose in between because you are experiencing symptoms, then you can. If you do need that little extra, then just make a little note. This will help your GP to know what to do next, if anything.

The scary episode you mentioned bookdaft. Did you take your Ventolin then? Did you know you can take up to 9 in an emergency?

Also, if you haven’t got a spacer, it might be well worth getting one.

When you I am short of breath I find that if I use the breath in the Ventolin and hold your breath is very difficult and makes me fell more breathless. In those circumstances I use the spacer and just breath in and out through it as deeply as I can.

Hope this helps.

[bookdaft in reply to Troilus]

I did use my ventolin but I probably should have used it more and sooner. I am still guilty of not recognising when I am symptomatic until I am REALLY symptomatic. Sometimes it's other people who notice before I do. I have got a spacer and in the past she has had me do tidal breathing using it and the ventolin but I don't think I did it correctly. The spacer is small and has a whistle and though I've used it for my routine inhaler with no problem it didn't seem to work for tidal breathing but that may have been user error! Thanks for the reply

[Jollygood]

Hi bookdaft. I always use my blue a few times throughout the day after an episode just as your gp advised. As troilus said it helps keep the airways open while you recover. Hope you feel better soon.

[lovelife00]

I don't know your age or what medication you are on or what triggers your asthma. Animal hair/dust can often be a trigger. My asthma was out of control. I'm 45. I'm on Forstair and Montelukast at night and it has really helped me. The weather does not help. Stress is a major trigger. Don't give up. If you are taking too much ventolin that suggests to me your asthma is out of control. Speak to an asthma specialist at your surgery. Ask to be referred to a consultant. Get an allergy test! Good luck x

[Glty]

I've also been advised to use my ventolin through the day when I'm struggling, my GP said that apart from helping with the ongoing symptoms it would also mean I would be able to get more of my preventor into the lungs when I took that. I certainly feel like it works to calm a flare down quicker when I take a couple of puffs of ventolin 15 mins before taking my preventer.

Hope you feel better soon.

[Joan_Public]

Hi

While Ventolin helps ease your symptoms by keeping your airways open, it doesn't address the underlying issue of inflammation and if this goes unchecked it can lead to damage / airways remodelling.

As Glty says, keeping your airways open can help get more preventer in your lungs, but upping the Ventolin is a sign that your asthma isn't controlled and is not really a long term approach to preventing and controlling your symptoms.

If your GP and asthma nurse are not able to work with you to find a medication regime that keeps your asthma under control, then you should ask to be referred to a respiratory consultant ... but with the current situation, you could be in for a long wait.

What preventers are you taking / have you tried? Has your GP suggested increasing your steroid / preventer inhaler or trying a different steroid / combi inhaler? Or adding something else like Spiriva?

Do you have an asthma action plan? A written document that tells you what to do / what to take / how much etc when your symptoms are exacerbating?

[bookdaft in reply to Joan_Public]

I'm on Fostair 200/6 and Montelukast since April. In April 2019 I was put on Fostair 100/6 after a bad flare and before that I was on Beclometasone. I've got a phone consult with the Respiratory nurse at my GP next week so we'll see what that brings. I haven't seen anyone in person since March when my asthma got worse though I've had several GP phone consults. I don't seem to be getting anywhere. I do not have an action plan but I have printed the one from Asthma UK

[Joan_Public in reply to bookdaft]

I really feel for you having uncontrolled asthma and not getting anywhere and the current situation with not being able to have a face to face consultation only making it worse.

The nurse / GP could maybe try increasing your steroids by adding an additional beclometasone inhaler to add to that which is already in the fostair combi as an alternative to yet another course of oral steroids.

I would say that a written action plan is essential. The nurse / GP should fill in the plan with you so you all agree to it and you know what to do when your asthma symptoms are exacerbating.

That getting nowhere feeling is just so frustrating, depressing and awful, so if the nurse's suggestions don't give you any benefit and you are still having symptoms / needing lots of Vento, then it is your right to ask to be referred to have your asthma evaluated by a respiratory consultant. There could be many reasons why its not controlled and this really needs to be evaluated so that you don't continue to suffer.

Forgive me, I really don't want to spend preachy. But I put up with years of getting nowhere, being fobbed off that it was all in my head (because I have severe MH problems) or that I wasn't using the inhalers properly. When i finally saw the right specialist, I found out it was a combination of bronchiectasis, allergic asthma and severe refractory eosinophilic asthma that was causing me to always have uncontrolled symptoms. And during this time, when my asthma was poorly controlled and not properly treated, my lungs have been permanently damaged. So I just don't want other people to suffer in the same way.

Hope you can find a treatment regime that works for you

[bookdaft in reply to Joan_Public]

Not preachy at all. Thanks so much. I just wish I could get to the bottom of it, even just to work out triggers. I thought I was having a bad reaction to tree pollen season since the flares I had last year and this were in March/April but it just hasn't really gone away this year. I'm hopeful the nurse will have some ideas but am a bit disappointed it will be another phone consult. I don't know what they are doing at my GP surgery but they certainly don't seem to be seeing any patients face to face! I know they need to be safe but I feel like they are almost certainly missing some serious issues amongst their patients, myself aside.

[Joan_Public]

Yes, I agree with you that phone consultations will mean that serious isssues could be missed. Not everyone can communicate effectively by phone. Our GP is running some face to face appointments, but only after an intial phone consultation.

The allergies / pollen thing: this is why you should ask for a referal so that your allergy status can be checked. Its a blood test so you would have to go to the hospital or clinic.

Its important to know what your personal triggers are. It could be many other things in addition to tree or grass pollens, eg: mould, animal dander, house dust, chemicals. So that's where the allergies testing comes in. Stress can also be a major trigger ... and there's been a good deal of stress and anxiety this year, with ongoing concern about the future ...

I'm having an exacerbation of symptoms right now, despite being on a really good regime that normally keeps my asthma well controlled and I'm sure this is down to a lot of change happening in my life plus the wider issues we are all facing.

Hope you can get some answers