I'm worried that my asthma is not well controlled, I'm on highest dose of Fostair which was switched from Flutiform earlier this year as my Asthma nurse believed I needed a higher dose of steroid to control my asthma as I frequently need Steroids. I also have Spiriva, Carbocisteine and Montelukast but despite this I've had three courses of Pred this year and it's looking like I might need another before the year is out 😢. I was under a respiratory specialist but I refused to go back to him after he tried to despute my asthma diagnosis and then made me and my mum look like liars in the letter he sent to my GP, I did see on the Asthma UK website that Long Term Steroids are recommended for asthma that is uncontrolled despite other treatments. Has anyone had any experience with taking steroids long term? I'm considering bringing this up with my GP because I don't want to go back to my respiratory consultant and that's the only one they refer to apparently and I have a lot of other health issues so trying to manage my asthma on top of all of those is exhausting.
Asthma not well controlled - Asthma Community ...
Asthma not well controlled
Sorry you are going through so much. Of course it would be sensible to discuss things with your gp but I would be extremely surprised if gp would agree to long term steroid use without a respiratory consultant agreeing. Long term steroid use is avoided as much as possible due to the potential serious side affects. Not sure where you live but I would have thought there must be another hospital respiratory team you could be referred to, even if you have to travel to a different hospital.
My consultant loves challenging my diagnosis.
If I do not persist with my consultant my gp asthma nurse will put me on long term steroids, which I am not keen on, as the side effects can be an issue for some people.
So frustrating as it is, I trust my consultant will get there, I smile and put up with the endless tests.
To get yourself a consultant you can get on with, you could simply ring and ask the respiratory department if it would be possible to see a different consultant. If that does not work ask your gp to help.
To help you work out how to phrase your request, in the New Year ring the asthma UK helpline and chat through your position with a nurse, they are brilliant. Their number is 0300 2225800.
In the meantime if your Asthma is deteriorating, ring your gp or 111.
Do give the helpline a call for guidance when they re-open on 2nd January.
I had a vile consultant, patronising and dismissive so I refused to see him and only saw his marvellous register
Hi, this sounds really frustrating. It does seem like you're at the point where you need referral as you're still needing courses of steroids despite several preventer medications - part of the reason for referral is to avoid too much exposure to steroids. However, I completely understand why you don't want to see the same consultant again - and honestly he doesn't seem very helpful anyway!
However, you really don't want to end up on long-term oral steroids if you can avoid it, and these days you shouldn't have to! A decent asthma clinic should be looking at all your options, including whether you could get biologic drugs which could help control your asthma without the need for steroids.
I appreciate that you may have limited choices for practical reasons eg where you can get to, but as far as I can tell, you should have the right to choose where to be referred rather than the GP forcing you to one hospital - I don't think it's up to them. This page may help: nhs.uk/using-the-nhs/about-...
I also agree with others who have said to call the nurses on the helpline when they open again on 2nd January. They're good with practical advice as well as asthma advice, and can discuss what your options are and how to discuss them with your GP. It might be that you're eligible for a specialist severe asthma clinic, not just your local hospital's respiratory general clinic, and your GP should not be able to refuse referral if so, but the nurses can advise on how to approach it with your practice if they're being stubborn.
I would also add that it is possible with some clinics to ask at the desk to see a specific doctor when you go, as long as you don't mind waiting a bit longer. I used to use this to avoid certain consultants in mine - you just say when checking in that you would like to see Dr X and they put a note. I've never used it to say 'NOT Dr X' as I am chicken and scared of offending but it worked as long as I chose someone else specific (I once saw the Dr I was avoiding pick up my file, read the note from reception and put it back then call someone else. Either that or she was avoiding me too lol 😂).
Hi, I was wondering if the consultant was challenging your diagnosis or thinking there could another underlying problem. I was treated for asthma for a very long time but when I eventually got referred to the consultant he identified another underlying lung disease that required a different course of treatment along side my asthma medication. You can ask your Gp to refer you to another hospital. There are also a lot of inhalers/treatments that are available that might be more effective for you. I don't think many Gps would see continues use of steriods to be the answer to your on going problems. A good chat with you Gp and discuss options and does he agree with the consultant?
I had a horrible consultant once, apparently “ women of a certain age get worried because they are no longer young and so they imagine they have asthma” actually I’ve had asthma since I was nine.
I went to my gp and asked her to get me another consultant, which she did.
Omg Yellow-dog,that's awful x
I know.imagine, someone spent years training to come up with that.
I think I've met this consultant, except sadly I probably haven't and there's just more than one like them. My standout was the cons who came out with gems including 'You just need to stop thinking you're ill' and 'I don't think you're mentally ill, it's just your personality'. (A resp consultant so not really sure why it was his job to pronounce on either possible mental illness or my personality, but he didn't like anyone who dared to disagree with him, or who didn't magically get better because he decided they should.)
My resp consultant decided that he could take away my asthma diagnosis despite being asthmatic since birth and told me that 'you've probably grown out of it now so you don't need your inhalers or to be taking steroids'. I've been on steroid inhalers since I was 7 and I always feel worse off steroids.
I agree that a fresh referral to a different consultant is the best option. You can choose which centre to be referred to and research their consultants and their fields of interest & expertise. Just because they work in respiratory doesn't mean they take an equal interest across all diseases or even types of asthma. My Prof is keen on eosinophilic asthma, but I'm non-eosinophilic. But one of his team was interested in my phenotype so I was fortunate enough to get treatment for a very stubborn period of asthma.
I've seen too many consultants & they each seem to have their own view on asthma, and at times it feels like Russian Roulette.
As for long term Prednisolone...while there are other things to try I would avoid, mainly because of the long term side effects.
That's amazing that you managed to get treatment. My consultant just wasn't interested at all! The first time I saw him, he said that he wasn't going to prescribe any further treatment as my Tests were normal and then the next time I saw him after a few years of back and forth with the GP, he told me that it was unlikely that I still had my childhood asthma and that I had dysfunctional breathing and that doing breathing exercises would resolve my problems without needing inhalers/ steroids/ nebulisers etc 🙄. He wasn't interested in trying to help me despite me explaining that I have needed X amount of steroids and sometimes antibiotics over the course of the year and that my Asthma nurse has had to change my steroid inhaler and that I've been asthmatic since I was a child, I was ventilated when I was a baby and have been on inhalers since etc, he just simply said 'Well right now, your asthma is stable so I don't see any reason why I need to prescribe any additional treatments.' I try to avoid Pred as much as possible but it's literally been the only thing that has helped when I'm stuck in a bad flare and recently I find that my asthma sometimes gets worse when I come off of it. I'm flaring at the moment and I'm trying to hold off having to see my Asthma nurse/ GP because they just don't know how to handle my asthma, they always think that because my O2 levels are good and I don't have a wheeze that I can't be 'bad enough' so they're always reluctant to prescribe me steroids even though I know myself best.
You definitely need to see a different consultant. Also, tests should be done, if possible, after stopping steroid treatment, in order to get a true reflection of the patient's symptoms and eosinophil & IgE levels. Talk to your asthma nurse about seeing a different consultant, even in a different hospital. It may be inconvenient to travel, but if it means seeing a more open minded consultant, it will be worth it.
hi Lilmix03,
I have a consultant like that! Because he used the term "dysfunctional" breathing and "PF stable" on a letter to my surgery they won't look past that. My PF was ok on the day he saw me, and a physio I saw later in the year said there was NOTHING WRONG with the way I was breathing anand It was obvious I was hypersecreting mucous like it was an Olympic sport!! But the opinion of a consultant seems to trump that of a physio!
On a horrendously long waiting list to go back to respiratory clinic and I really hope that consultant has retired now so I don't end up sitting opposite him again. And I can't afford private treatment, or to travel further to another hospital.
surgery are useless, just shrug their shoulders and say ' wait until the consultant has seen you, then we'll have a plan'............
My problem has been with GP ,mine has retired so now anyone is at other end of phone/keyboard/face to face and just dishes out the amoxicillin and steroids making 7 times on a week of 40mg and now 2 weeks of 40 down to 20mg ,making 9 issues since Feb.,Got referred back to local hospital respiratory consultant ,he straight away referred me to a london severe asthma clinic ,after waiting 5 months to hear from them i chased them for a appointment in Dec and im starting biologics in January.They discovered im resistant to amocycillin. Im on 10mg a day steroids to try hold things until the 1st injection because as soon as i come off i flare up .Thankful something being done at last but tired from the struggle to do daily normal things .
This is awful! I've had this same problem with my Dr a lot, they shift from one extreme to the other. Sometimes I literally have to keep going back to them 3 or 4 times when my asthma is flaring to get anything because all I'll get from them is "You don't have a wheeze and your O2 sats are good so I'm not going to prescribe you anything right now" Even if they can literally here me coughing and struggling to breathe and then other times they literally just send the prescription to the pharmacy. I've been struggling so much this past week with my breathing and I've been coughing so bad, waking up at night etc, I finally gave in and started my steroid rescue pack two days ago and I'm always amazed at the difference in how it makes me feel, this is my second pack since the start of December and I think probably my 3rd or 4th this year. I'm definitely going to speak to my GP or Asthma Nurse about starting a maintenance dose of steroids to see if we can just keep that inflammation down as well as getting a referral to a severe asthma clinic rather than respiratory because they don't seem to actually want to do anything with me.
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