8 puffs 200/6 Symbicort daily for years

[sciencepotato]

hi there,

Just wonder if anyone else has been on 8 puffs Symbicort 200/6 daily for a few years and has been OK on that much. I use it with spacer.

I have a difficult to control asthma,I'm on biologics too.

[Phoenix1992]

Hello sciencepotato,

I have been prescribed Symbicort since taking part in a clinical trial for Symbicort SMART - not sure of the year - 2006/7 maybe. (Maintenance 4 puffs a day, up to 12 when needed)

From 2010 to 2020, I was taking 12 puffs a day (400/12 inhaler equivalent of 6 puffs, not SMART)

2020 -2022 slowly reducing by being back on SMART

2022 - present Symbicort SMART with 4 puffs daily maintenance, up to 12 puffs when needed.

2024 - more symptoms, so I requested a pressurised inhaler and spacer.

I have to use the 100/3 inhaler as 200/6 pressurised not available in UK for asthma. (GP level prescribing, maybe could be at Consultant level - off label.) Same equivalent dose as before, but the SMART guidelines are double puffs to get that same dose, if that makes sense.

[sciencepotato in reply to Phoenix1992]

oh thank you so much for this, were you feeling okay on 12 puffs of 200/6 for a long time? I keep getting told that I'm taking 8 puffs and it's not good for adrenal glands that might stop producing cortisol over time. Have yours been OK?

I actually use 200/6 meter dose inhaler through spacer - available via my gp.

Thank you for your message,.it sounds really reassuring. Especially that I can increase my Symbicort when ill for a few days and still be okay.

[Phoenix1992 in reply to sciencepotato]

I have multiple questions, I hope you don't mind and don't feel obliged to answer them.

Are you in the UK? Do you have an asthma action plan and see somebody regularly for reviews?

I am assuming if you are on biologics, you are under a consultant. Who is questioning you around being on 8 puffs a day? It is true regarding a risk to affecting adrenals with higher doses of inhaled steroids, but much safer than oral steroids.

I was on the 12 puffs for 10 years along with other meds because they couldn't find a solution. I was not controlled on the meds I was on all year round and relied on a home nebuliser (salbutamol) to stay in work as much as possible and to function. Very little quality of life.

Now, I take the 12 puffs only when having needing and I can judge over 4 to 5 days if I am improving/staying the same/getting worse and I know I need to seek advice. 12 puffs now is because I am on SMART/MART and is only a very short term time, I wouldn't go longer than 5 - 7 days without seeking advice. I know my asthma very well, so am able to make that judgment.

The only people who question my dose, are asthma nurses at the surgery.

I had my cortisol levels checked once during my 10 year 'worst spell.' But I was on multiple doses of oral steroid each year, the longest period being 55 days after reacting to someone's vape at work.

I am conscious that it is a risk for my adrenals, but breathing well and having a quality of life is too important to me. I am hoping to get 'full' control of my asthma on this inhaler and spacer. I haven't had full control since 2003. And that was very brief, since being diagnosed in my mid 20s in 1987. I definitely don't fit into a neat little box.

Being diagnose with a breathing pattern disorder on top of my asthma has been the life changer for me.

I hope this is useful for you. Not everyone of SMART/MART is allowed to go up to 12 puffs, they have to seek advice sooner.

Please feel free to ask any questions. 🙂

[sciencepotato in reply to Phoenix1992]

No worries,

Yes I'm UK based and under severe asthma clinic / consultant. Her doesn't know about asthma though, he specialises in other lung conditions unfortunately. But he gave me a biologic so I'll be forever grateful for that.

Yes, it's him and my endocrinologist who are shocked by how much I'm taking every day. But as you said we know our bodies best and what works and what doesn't. I always stand my ground and they have no clue as they never lived with this condition. I just wanted to be reassured by someone like you that it's not caused any issues down line to be on a high dose like this.

[sciencepotato in reply to Phoenix1992]

I'm glad you are getting relief from breathing techniques. For me it was actually annoying as my consultant was blaming my symptoms on my breathing pattern disorder and there's no way to change his mind. I have it too but I don't notice it and physio also said I don't need managing it more than I am.

I wish you luck and hope you get your asthma under control!

[janedivney in reply to sciencepotato]

Your consultant doesn’t sound much cop. What’s he doing in a severe asthma clinic?! So many health professionals don’t seem to understand that asthma affects us all in different ways. It’s so difficult to argue when you’re breathless though

[Pipsqueak77 in reply to janedivney]

Hi

Absolutely agree… what is a cons doing in a severe asthma clinic if they know nothing about asthma?!! Eek😳

That aside.. I thought it was actually part of the NHS asthma plan/promise to have these clinics staffed by experts??

Before taking a bio I was on Symbicort 400/12 x 8 doses per day. Off label, prescribed by my cons. I found it really good but eventually stopped being effective.

I now take Relvar 184/22 and Qvar 100 together as necessary. So pretty high dose if needed.

I have never had my adrenals tested but to be fair, I think they wouldn’t function very well. However, as has already been mentioned - I need to breathe more..🤷‍♂️

Good Luck sciencepotato. 🤞

[Lysistrata Administrator Community Ambassador in reply to Pipsqueak77]

Agreed re the cons! sciencepotato, I'm actually wondering if they've just named it a severe asthma clinic, like 'on Wednesdays we see severe asthma patients' sense, within a general respiratory service? Rather than it being commissioned specifically as a severe asthma clinic. But then I didn't think that kind of clinic could offer biologics so I may be wrong. It is frustrating though to get to a severe asthma clinic and not have an asthma specialist!

On the other hand, I see a confirmed severe asthma specialist and he doesn't seem to understand asthma is variable and I can't just produce it on demand in clinic, nor that non-eosinophilic asthma exists. He's also just ever so slightly ego driven (by which I mean his ego threatens to block out the sun and he never listens to patients) so being an expert is no guarantee that the consultant will be helpful. The best consultant I ever had claimed to not know enough about asthma - but he actually did and more importantly, he listened to me and treated me as an individual.

Re the Symbicort - I used to be on about that much as a combination of Symbicort and Pulmicort. It wasn't ideal and I will acknowledge that my current consultant being more up to date did help as he changed me to Fostair Nexthaler which works better for me.

I've just seen you're using Symbicort as a metered dose inhaler which explains the spacer - I got confused by that initially as I didn't know there was a non-dry powder version. Apart from the biologic, are you just on Symbicort + reliever?

I agree with others that it's best to control asthma, because you can manage adrenals if it comes to it. I also agree that keeping it controlled with inhaled steroids is better for your adrenals than a lot of oral steroids would be.

I had adrenal insufficiency from oral steroids but I recovered. I think it was probably because I don't respond to oral steroids anymore so I don't get them for flares. I am still on high dose inhaled steroids but my adrenals are ok with those.

People are different and it is possible, though rare, to get adrenal problems from inhaled steroids. However, I do feel like there may be better ways to handle this than all the Symbicort, if that's all you're on besides the biologic. There's no point them being alarmed at all the Symbicort if they're not going to suggest any alternatives!!

You might find it helpful to discuss with the asthma nurses - they're good at offering strategies for when someone like a consultant or GP isn't being that helpful, and they could provide you with some suggestions for alternatives to take to your next appointment. 0300 2225800 or WhatsApp on 07999 377 775 Monday-Friday 0915-5pm

[sciencepotato in reply to Lysistrata]

Thank you, Lysistrata, for your knowledgable input. I agree with you totally, seems that the ego driven consultants are the worst when they are consulting. The modest and knowledgeable ones are so rare 😢

Oh I'm on tons of medication : dymista 2 daily, claritin 2 daily, montelukast, acetylcysteine, Spiriva, Symbicort 8 daily, ventolin almost daily too. I started off on Fostair but then changed to Symbicort as it seemed a bit stronger for when I needed stronger. Having chest infections changed something in my asthma, it is never like it was three years ago when it all started.

I feel my adrenals are starting to give up - my latest morning cortisol was only 200. I'm not awaiting a synacthen test but for that they want me to stop all steroid based inhalers for 48 hours!!!

[Lysistrata Administrator Community Ambassador in reply to sciencepotato]

Ah I remembered you were when you posted a while back but wasn't sure if the biologic had changed anything!

I do think it's quite individual - I like Fostair and the fine particle formulation, and Symbicort dry powder didn't work as well for me as I struggled to take it when I was unwell and then got worse as a result. But I know others really don't get on with Fostair!

It makes sense re the chest infections making your asthma worse. It sounds like no one has looked into why you have so many? I would say maybe pred, but if your asthma only got worse *after* you started getting them, then presumably you hadn't had that much pred before that to cause them? But really they should be looking into that to see if there's anything they can do there to reduce them.

[sciencepotato in reply to Lysistrata]

Biologic changed how many chest infections I am having. Before them every cold went down to my chest. Just asthma wasn't controlled.

[sciencepotato in reply to Lysistrata]

I absolutely loved fostair but after a while 100/6 dose stopped being enough as I was taking 8 daily and needed more. That's when I switched to Symbicort 200/6 mdi. I wish I could be on Fostair 200/6 more than it's officially licensed for (I think only 4 puffs daily).

[sciencepotato in reply to janedivney]

yes, some consultants should not be consulting. To be honest I would rather be under his care as he'd refer me to get the tests done or specialists seen relatively fast, he was the one who started me on the biologics despite all normal asthma test results and it's been life changing. It's a severe asthma clinic with literally just 3 cons specialising in asthma. But at least there's asthma nurses helpline. I was under a junior doctor before and she's absolutely disgraceful - within a year saw me only once never ordered any tests, just referred to speach and language therapy and even that never happened. Utter horror. While I was waiting to actually speak with a consultant there I deteriorated so bad, I started having back to back chest infections and often on pred which shattered my adrenals.

[Phoenix1992]

Thank you for your reply. As I responded on another post, totally respect the physio's knowledge.

Apologies for my typos on my last post, typing too quickly! 🤣 I will go back and edit at some point.

Yes, I hope my adrenals continue working OK.

If I do get full control, I am hoping I can reduce my maintenance dose for at least some time in the year.

I have allergic and non-allergic, so too many triggers. Especially with our winters now milder. My consultant suggested I try and correct my breathing pattern before I reach for the inhaler, I do this if I am not having a major response to a trigger. I have learned for me, if the symptoms are there after 20 minutes of focussing on my breathing pattern, it is asthma causing my symptoms. It's a bit time consuming, but worth it.

Thank you for wishing me luck. You take care

[janedivney in reply to Phoenix1992]

My adrenals packed up years ago but it’s not been a massive issue. I’m on cortisol replacement therapy, which can be either hydrocortisone 3 times daily or prednisone once daily. The endo clinic did tests to find out exactly what dose of pred I needed (4mg). As long as I take this I’m completely fine. The only tricky part is remembering the “sick day rules”, ie if I’m ill or having a procedure I have to double the dosage.

[Phoenix1992 in reply to janedivney]

Thank you for this information janedivney. That is reassuring to know. I think it is good to be aware that it could happen.