GP won't increase my inhaler for winter

[Mandevilla]

Damp weather (mist, fog, misty rain) is one of my biggest triggers, so I'm usually a lot worse in winter than summer.

I was diagnosed just before Christmas last year and started on Clenil modulite 100, which didn't work, so I was increased to Clenil modulite 200 and told that I should go back on to 100 in the spring. I did (apart from a blip in late March and April when Covid made my asthma flare up again) and I've been ok over the summer.

The last couple of weeks, I've been needing my blue inhaler more often and still not feeling quite right (you know that 'only just ok' feeling, when it would only take a tiny trigger to set you off?) I was running low anyway, so I asked the GP if I could go up to the 200 inhaler for my next one as I was getting worse. He's just issued another 100!

Does anyone else have this problem? My GP is obsessed with keeping my medication as low as possible, even if it leaves me gasping for breath! If I tell him I'm struggling, he goes on about how 'really bad' steroid inhalers are and how I need to keep the dose as low as possible. And I'm thinking 'however bad they are, NOT BEING ABLE TO BREATHE IS WORSE!'

I know from past experience of flareups that if my lungs get too irritated it takes ages for them to calm back down again. I just don't know what to do to get an increased dose before I reach the desperate stage. I know I could just double up on my current inhaler, but the problem is that it is set for reissue based on 1 puff morning & evening. I'm scared that if I double up, he won't reissue it and I'll be left with nothing.

The bizarre thing is that I'm offered a limitless supply of ventolin. Just about every time I speak to the surgery I'm asked if I want another one. It's as if they see that as what I really 'need' to control asthma and the maintenance inhaler is an optional extra...

[Claire_ALUK Partner ALUK Asthma Nurse]

Hi Mandevilla, would you like to give us a ring on the helpline to discuss this? - I agree it sounds like you need some extra help and that your asthma is not well-controlled ATM.

Tel: [phone] option 3 nurses

[Bevvy]

This gp has totally backward thinking. Usually people post on here to say they are being limited on amount of ventolin whereas your gp seems happy to provide you as much as required. But YOU are correct in that your maintenance inhaler is what should be doing the job to keep your asthma under control. Is there an asthma nurse at surgery or a different gp you can speak to? It seems entirely reasonable to increase inhaler power over winter months and then drop down again over summer. Hope you able to speak to someone sensible at the surgery. Also if you speak to asthma nurses here, they can advise you of what to say to medical staff and what to do if they still won’t agree.

Hope you are able to get it sorted quickly.

[Chip_y2kuk]

you and your GP are both right.... i know how that sounds

Your maintenance inhaler doesnt sound like its strong enough " to do the job" however the next step on the ladder is the addition of a LAMA (long acting airway opener like ventolin)... so maybe inatead of clenil 200 you could try fostair 100... its beclomethasone as the steroid (same as clenil) with the addition of formoterol as the LAMA

But your gp is also right in that steroids are terrie for the body and the lowest managable dose (infact nice's stepwise system calls for the lowest treatment to manage symptoms)

Im on a high dose inhaled steroid and my immune system doesnt work properly as a result and neither do my adrenal glands... ontop of that i bruise like a peach (god knows what else its doing) .............. so really i think your gp is looking out for your best interests but should have come up with an alternative idea instead

P.s im mid 30's so the above isnt because im old

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

Sorry to nitpick here, but as a lot of people will read these posts I want to respond on a couple of points you made.

Ventolin (salbutamol) is not a long-acting reliever, and using loads of it because you're not controlled isn't the same as using a fixed dose of a long-acting reliever like formoterol (which should be used with an appropriate inhaled steroid dose. And again being picky but to avoid confusion, formoterol is a LABA (long-acting beta agonist), not a LAMA (long-acting muscarinic antagonist, like tiotropium)).

What this GP is doing is also not like a MART (maintenance and reliever treatment plan) where you have a limit on the number of doses you can take of your combination inhaler. I know you didn't mention MART regimens, but I am since some people do use long-acting relievers in this regimen. However, it's far more regimented and dose-controlled than 'use as much Ventolin as you like'.

You're right that inhaled steroids should be the lowest dose possible, but if asthma isn't controlled, then the chances of needing *oral* steroids is higher and those have more side effects than inhaled. Not to mention the risk from the asthma!

I think Mandevilla's GP does mean well but doesn't understand asthma and isn't following guidelines properly. It's dangerous to keep someone on a dose of inhaled steroids/other preventers that isn't enough to control them and say they can make up for it with extra Ventolin. The GP shouldn't be trying to reduce Mandevilla's meds or not increase them when they don't have control of their asthma. That is how people have serious attacks and die. Adrenal insufficiency I agree isn't great (I've had it from oral steroids, now recovered, still on high dose inhaled steroids), and it can be caused just from inhaled steroids though that's less common. However, it can be managed; dying from asthma is irreversible.

Mandevilla, I did wonder from a reply you made in the thread about Dr Andy's Q&A whether you were on enough preventer, given how twitchy your airways seem to be with weather. I'm glad you've spoken to the asthma nurses and fingers crossed you get somewhere with the locum! I agree with Chip_y2KUK that there needs to be a different approach to this - which doesn't have to be all based on inhaled steroids, there are other options alongside.

As others have said though, don't wait if you get worse, get help if you need it and be persistent (believe me, I know how hard that is but it can be necessary!)

[Chip_y2kuk in reply to Lysistrata]

sorry yes you are correct

Ventolin is infact a SABA .... Short Acting Beta Agonist

Formoterol is a LABA ... Long Acting Beta Agonist

AND Spiriva is a LAMA ... as you already said long acting mucarinic Agonist

I Shouldnt try and be clever and reply quickly it doesnt work

[Mandevilla in reply to Lysistrata]

I won't be waiting till next Monday if it gets any worse. Hoping I'll be ok till then though, as the forecast is for dry weather for the next week. Haven't needed any Ventolin today, and feeling much better, so if the weather stays like this, I'll be ok until the appointment. Just hoping the nurse is a bit more asthma-aware than the doctor is!

[Mandevilla]

Thanks for the input everyone. I rang the helpline and was advised to do an Asthma Control test and if the score was low, to ring and ask for an appointment because my asthma was poorly controlled. I scored 11, and I've got an appointment a week Monday...

It will be the first time I've seen anyone face to face about my asthma since before I was diagnosed (the locum who first raised the possibility of asthma sent me off for tests to rule out anything else - I was given the results of the tests and the asthma diagnosis over the phone and it's all been by phone since then!) so I'm hoping it will be at least some help. Just have to hope I can survive the next 10 days or so...

[Itswonderful in reply to Mandevilla]

if you feel you can’t wait that long ( which is what I am reading) then phone 111. Do not wait.

[Mandevilla in reply to Itswonderful]

I definitely will if I get any worse. Actually feeling slightly better this morning - it's dry and sunny, so if it can stay like this for a week, I should be ok!

[Chip_y2kuk in reply to Mandevilla]

if your suffering a wait of a week and a bit isnt going to cut it .... it should be same day or day after at worst

You can only struggle on for so long before you end up in bother

3 months ago i used 111 for out of hours unfortunately i got a nurse practitioner who wasnt going to listen 3 days later i was in A and E and they wouldn't let me out because my lung wasnt filling with air properly .... 10 days of steroids and 15 days of antibiotics for good measure

[Emaych61]

I experienced something similar many years ago after my asthma preventer inhaler was switched to the lowest possible for my asthma (it was Becotide 100) by a consultant, who said my asthma was mild. I began to have problems at once and went to my GP who refused to increase the dose saying it was probably down to my technique.

To cut a long story short I ended up relying more and more on a ventolin inhaler after eventually giving up on the GP. That worked fine until I picked up a nasty bug from school (I was a primary school teacher at the time). It began with a tight little cough one Wednesday afternoon. Less than forty eight hours later I was whisked in to hospital by ambulance. I had developed pneumonia and my asthma had spiralled completely out of control. My peak flow rate (the first time I had experienced a peak flow metre) was down at 150. We later discovered that 425 was normal for me. Then consultant who had put me on Becotide 100 changed his mind and upped it to 200. Even that wasn’t really enough, though it was much better. It took another six years and a move to a different area of the country before I was put on something with enough strength to bring my asthma to a point where it could be described as “well controlled”.

If you know your asthma is not properly controlled by the medication you are on currently, you really do need to get it changed to improve the situation.

[Hanna222 in reply to Emaych61]

Same thing happened to me, except I was switched to a different steroid as well as to the lowest dose. In the end I ended up with the highest dose and add on meds, without regaining control. After 6 months of completely uncontrolled asthma I asked the consultant if I could simply go back to my olds meds, and he said yes. Things improved significantly, but I’m still not back to where I was before.

[Mandevilla in reply to Hanna222]

I'm so sorry - it's really frustrating. I hope you have things totally under control very soon x

[Logo132]

does your surgery have a designated asthma nurse?

[Mandevilla in reply to Logo132]

The website says that "The practice nurses have special interests in the care and management of asthma" so I would hope so. I have no idea though, as I have never seen anyone or had any help from the surgery in managing my asthma since I was diagnosed. It was literally "We're diagnosing you with asthma - you need to collect your inhaler and spacer from the pharmacy. Use them as normal." When I said I didn't even know what a spacer was and had no idea how to use an inhaler, I was told "Google it. There are Youtube videos demonstrating how to do it." And that's been as helpful as it's got!

[AlexInWiltshire in reply to Mandevilla]

Oh no, that's terrible from your GP! Not caring at all.

And not everyone even has access to the internet to look up how to manage a serious illness.

I hope that you get better support from now on.

[fraid]

You’d think you were asking for a kidney with some gps.Asthma nurse insists I stay on 2 puffs 2x day Preventer Clenil,though chemist now given me different one.Says tiny amount of steroid gets into body,but surely over a long time that takes its toll? We just wanna breathe!🙄Hope you get it sorted.x

[Mandevilla in reply to fraid]

Maybe that's it - they're hoping I'll die from not being able to breathe before the steroid 'takes its toll' on me. Given the choice, I'd rather take my chance with the steroid and keep breathing!

[Mandevilla]

I've just got back from my appointment with the practice nurse who was BRILLIANT! She checked my inhaler and peak flow technique and told me I was doing it really well which is reassuring - I've had the Asthma UK nurses talk me through it on the phone and I've also watched videos, but nothing beats actually doing it in front of someone who knows what to do and who can check you're doing it right. She has prescribed me a new 'breath actuated' inhaler which has the long-acting reliever thingy in it as well, which I only need to use once a day (I can't remember what it's called, and it won't be available to pick up until tomorrow) She said that if this doesn't work, there are loads of different treatment options available, and we just have to keep trying them out until we find the one that works for me. So much more reassuring than my 'take more Ventolin' GP!

She's also booked me in for a flu jab in a couple of weeks time. And told me to come back in a month so they can see how the new treatment is working, but to come back asap if I get worse.

It's so reassuring to have found someone at my local surgery who can be some help. I had a horrible weekend and got scared I'd end up in a&e before getting to see the nurse, so I'm really hopeful that this will be the start of getting things under control again.

[Poobah in reply to Mandevilla]

That's such a good development! Hurrah! I hope you're now able to start feeling better. The practice nurse sounds excellent. All the best Mandevilla.

[Mandevilla]

Just wanted to give an update - I've been using the new Relvar ellipta inhaler for 2 weeks now - I needed one puff of Ventolin 24 hours after starting to use the Relvar and haven't needed any since. And we have had two days of the kind of misty rain that would normally leave me bedridden and struggling to breathe.

[Poobah in reply to Mandevilla]

That is good news Mandevilla, it's nice to hear such a positive update. I hope you have a good winter.

[CraftyLego]

That's not good. Keep pushing them for the higher dose. I'm in my first year of asthma and it's been very mucusy since mid September.

[Mandevilla in reply to CraftyLego]

The new medication that the asthma nurse prescribed has been brilliant.

[CraftyLego in reply to Mandevilla]

That is good news.