Asthma Meds Reduction?

[Tengudreams]

Hi everyone. I have been on one puff of Symbicort 200/6 for over a year now, and my asthma seems very well controlled. I saw my specialist today and he remarked that I could try stopping the med all together, ie not taking the puff at night anymore. I am a little scared to do so, having this idea that suddenly I will have some major attack and blow up. Any thoughts on stopping asthma meds after asthma seems controlled for a period of time? Dr said I could just start taking it again if it started to act up. Im on the Symbicort SMART program.

[twinkly29]

Have you literally been on 1 puff a day (ie not morning and night)?

That's a bit weird in itself as steroid inhalers are generally twice a day (as the regular bit) because they last about 12 hours (there's one that's once but that's because it does last 24 hours). Having googled the drug info, however Symbicort is taken/at whatever dose it says it should be twice a day.

However.....this "weirdness" then possibly actually helps in your situation because you have been ok on that - suggesting maybe things are indeed ok for further step down.

I say that having no idea about step down right at the very early stages of meds though. Stepping down now may go well and if things change generally in the future (as can be the case with asthma) then they can always be stepped up, which I guess is what the doctor was meaning.

Other thoughts would be:

- yes you could restart if there were issues but it takes about 8 weeks for steroid inhalers to become properly effective so although the LABA element would help more quickly, you'd get no quick (even in say a week) help from the steroid bit for a couple of months if you went from nothing to restarting.

- having to restart if it didn't work is doable though (and not dissimilar to someone being stepped up having to wait it out while new meds take effect) - and at least the trial would show one way or the other if you need it now.

- I've heard of some asthmatics just being on mart as required so no regular doses but literally as required (a bit like just being on a blue inhaler - which I think is discouraged now anyway). If you did this then, as above, you wouldn't get the steroid effect when used occasionally but would get the bronchodilator relief bit. Think that's how it would work.

- one option might be to ask if you can try a just-steroid inhaler (so not a combi one/no LABA element) alongside a ventolin if required. Budesonide would be the obvious choice as it's the steroid that's in Symbicort. Pulmicort is a budesonide steroid inhaler. It depends though what it's available in because it still needs to be twice a day (in theory.... although you've been ok with once so 🤷‍♀️) and as far as I know the lowest dose is the 100....which is the same amount at a time as is in your Symbicort. Other just-steroid inhalers may come in lower doses (well I know they do but not sure how they then compare to what you're already on) but then you're starting again getting used to a new drug which, in your situation of perhaps not needing the steroid, seems rather pointless.

Maybe phone the Asthma UK nurses to discuss it? They are brilliant might give you a handle on it to discuss with GP.

AUK helpline - 0300 2225800 Mon-Fri, 9am-5pm

[Tengudreams in reply to twinkly29]

That was a well thought out response, thank you. I was originally on one in morning then one at night. When it got bad I was on four a day, and once I had to take all eight puffs. However, learning about my triggers and also creating my own self care and supplement program, I slowly got down to one a day and have been fine. I find taking a puff right before bed the most effective. It I take my puff during the day, I feel not nearly as good...oddly enough: But asthma is weird and so is life, so I just roll with it.

Thanks for your suggestions and they are all things I will consider.

Stay safe!

[twinkly29 in reply to Tengudreams]

It really should be twice a day but guess that's something to discuss with your GP. The feeling not as good is an indicator that actually it's not enough by the way.

But... having thought some more, a possible step down would be to suggest the Pulmicort 100 (taken twice a day but makes the same dose you're on now once a day...so lower at a time but balanced). The bronchodilator element is removed so meds are stepped down but you still have something which is probably what is making you ok at the moment - ie you're ok because of the meds. Then have a ventolin as reliever for now.

[Lysistrata Administrator Community Ambassador]

Hi,

I agree with Twinkly that if you struggle a bit on one puff a day it may not actually be enough. Given asthma is worse at night, I'm wondering if one daytime puff isn't addressing nocturnal symptoms enough and making you feel worse? (Just speculation!) You don't have to fully wake up to be struggling at night - I'm wondering how you are first thing if you take your one puff in the day? Definitely tell your GP about the situation though, given Symbicort isn't really meant to be used once a day.

I also wanted to expand a bit on what Twinkly mentioned here:

- I've heard of some asthmatics just being on mart as required so no regular doses but literally as required (a bit like just being on a blue inhaler - which I think is discouraged now anyway). If you did this then, as above, you wouldn't get the steroid effect when used occasionally but would get the bronchodilator relief bit. Think that's how it would work.

I've had to look into this a bit for work (not medical/healthcare but a scientific area where I need to read a lot of scientific literature.) For mild asthma, GINA guidelines do now recommend that instead of just using a reliever inhaler or reliever plus low dose steroid preventer, anyone aged 12 plus can take a low dose steroid-LABA combination inhaler as needed when they have symptoms. So as Twinkly says, like SMART but without the maintenance bit, you just take it when you'd normally take reliever.

I appreciate this sounds counter-intuitive and like it shouldn't work, given that normally steroid inhalers do need to build up. However, this is based on research that found doing it this way for patients with mild-moderate asthma actually reduced severe exacerbations (3+ days of oral steroids or hospital admission), compared to the same dose of inhaled steroid plus reliever as needed for symptoms. It does suggest the steroid element is doing something, because symptoms and exacerbations aren't necessarily linked. They are to some degree, but roughly speaking the LABA is addressing symptoms and the steroid is addressing underlying inflammation that can increase risk of attacks. Some people of course do get more symptoms with exacerbations, but some have few to none but a lot of inflammation, and then get surprised with an attack - so this covers both sides.

In a trial people usually take their meds as needed because they're monitored, so I suspect the real-world effect may be even greater, since many people at that level don't feel the need to take preventer all the time if they don't have symptoms. They just rely on the blue inhaler as needed, which is going out of favour as a treatment by itself for the reasons above.

Obviously this as-needed approach isn't for everyone as some people do need that constant steroid dose, and it may not be for you if you find you struggle at times with one puff of Symbicort. But I just wanted to expand on it in case it's helpful, for you or anyone else reading it, to discuss with your GP.

ALSO PLEASE NOTE for anyone reading this (not saying you would Tengudreams) don't just start doing as-needed by yourself, or skipping your preventer!! This isn't suitable for everyone and you absolutely need to discuss it with your GP, and change to something else if it doesn't work for you.

[twinkly29 in reply to Lysistrata]

Thank you! I knew you'd be more up to speed with how it actually works....! I went with basic knowledge + what made sense in my head. There's a good combination 😂.

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

I mean it does make sense to think you need to have the steroid in all the time and it wouldn't work with occasional use - that's how it's been for ages. I thought the same until I had to write a large chunk of a paper on current management strategies and guidelines, and then was thinking 'this is weird, but it does seem to work, and definitely addresses a lot of issues with people who don't see the point in taking preventer when they're mild!'

[Griffon]

Hi , What your doctor is recommending is exactly what I did with my own asthma . Having suffered an attack that lasted continuously for eight months , when it was finally brought under control I weaned myself off the medications and have had no further attacks for a couple of years now . Asthma can come and go with no apparent reason , so common sense dictates to treat it as and when necessary .

From AUK: Any changes in your medication and asthma treatment plan should be discussed in detail with your health care professional first, and the changes be reflected in your asthma action plan 👍.asthma.org.uk/advice/manage...

[Lysistrata Administrator Community Ambassador in reply to Griffon]

As mentioned, the as and when approach is not suitable for everyone and should only be done with medical advice - as should reducing medications.

Treating asthma 'as and when' may have worked for you so far, but it's also led to deaths when other people do it but it's not suitable for them, often just treating 'as needed' with a lot of reliever. Again, the as needed approach I posted about is a considered strategy *for certain people* done with medical advice, not 'common sense' which may not actually reflect the scientific and medical reality.