It’s badly managed and causing me to experience constant wheezing and coughing. 95 oxygen sats.
The problem is my surgery keeps giving me powder inhalers. I don’t like them. The powder ends up on my tongue (I have a big tongue !). I can’t get the technique right and give me thrush despite rinsing and brushing my teeth every time.
Last one was Fostair and Christmas was miserable as I had really bad oral thrush. I’m in tears after getting home from pharmacy to discover the GP today prescribed Symbicort. She said it would be better than fostair but it’s the same! I just want the classic brown one! Why have they made asthma treatments so complicated?
I have never had an asthma plan. Consultations always rushed with no information given. NHS GP today is the lady who fits coils, she didn’t seem to know much. Didn’t listen to me about the thrush.
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Stardragongirl
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Thank you for replying, that has made me feel so much better and more positive. I literally have no one to talk to about this as don’t know anyone close to me with asthma.
I feel unheard at the GP but you’re right, I don’t know what to ask for. I’ve tried educating myself online but it’s so overwhelming and I get confused between all the different inhalers and the names of the medicines in them. It’s a real minefield. I end up saying the blue one and the brown one!
I’ve no idea why they won’t let me use the old fashioned ones, besides them saying they don’t work as effectively, but they do. It’s only since they started messing me around with the powder ones a few years ago I’ve had problems. As a consequence I stopped using my inhalers, stopped going for reviews and just got used to a new normal. But after going on Fostair (before the thrush) it was a revelation and I realised just how uncontrolled and bad my asthma had been.
I will give the helpline a call on Monday and write notes to take to the GP / asthma clinic (if I can get a slot- demand outstrips appointment availability- I guess living in a heavily polluted area means we have a lot of asthmatics around here!)
I also realise I need to take control of my own health and educate myself if the GP won’t help educate me. Hence why I signed up to this forum. Thank goodness for Asthma UK and all the other charities helping us sufferers.
Thank you so much, I’ve been so teary this evening and it’s helping feeling listened to and knowing there are options.
Two comments from a doctor with special interest in asthma: GPs are currently being paid to switch people to DPIs ( dry powder inhalers) from pMDIs ( the pressurised spray type inhalers) because the gas inside them ( the Flourinated or F-Gasses) can damage the environment. While this is true most of us who are doctors with an interest in asthma are very concerned when the switch to dry powders is harmful. For example in your case, where you can’t take or don’t like the dry powder inhaler. Our advice is always - put the patient first and ensure tgat the person can use tge inhaler and also that the person is satisfied with it. The problem being that if a switch to dry powder inhaler reduces asthma control and results in someone having an attack - the effect of ambulance/ car journeys to doctors or hospitals, the effects of the increased use of inhalers or anaesthetic gasses, as well as the use of electronic equipment is far more harmful for the environment than the use of the pMDI ( the old fashioned one you refer to). (In addition this is unnecessary to switch people now because there are new F-Gasses being developed that will be available in 2-3 years in new inhalers.)
The other important thing is because you are not responding to the steroid tablets, is to ask for an urgent ( ie immediate) referral to an asthma specialist( nurse / GP or hospital person with asthma expertise) - you need your inhaler technique checked, you may need to use a spacer with your inhaler, you possibly need a different preventer inhaled corticosteroid drug - for eg there is one that doesn’t cause thrush - called ciclesonide - - the only disadvantage with this is that you would need the Formoterol reliever ( as in Fostair) prescribed separately in another inhaler because ciclesonide is not available in a combination with Formoterol. Finally the diagnosis of your current problem may be something other than asthma!
I am shocked that they are being paid to switch people. I personally believe that when it comes to something serious like asthma, asthmatics should have what actually helps as we are rhe ones that have to live eith this day in day out and when your medication doesn't help, it's very depressing. My asthma is now well controlled, but when I reflect on the years it wasn't, I was miserable. I am glad there are considerate GPs out there that know their priority is the patient first.
Wow, thank you so much for taking the time to share your knowledge, I really appreciate it. So interesting about the incentive to prescribe powder inhalers, but also quite worrying that NHSE / NICE are messing with patients medication for non clinical reasons.
I could understand if an equivalent drug (tablet) becomes available and the side effects are the same, but powder inhalers are so different and commonly cause thrush. Didn’t they do an impact assessment? I’m really annoyed I’ve been switched for this reason and not for clinical reason and this has not been explained to me.
I am writing all of this down, will phone the asthma U.K. helpline and book an appointment so I can go in empowered this time.
…. I will also ask to see an asthma specialist. Met my friend who is a hospital doctor this week and he was concerned by my heavy wheezing - said it was bad and has seen fatalities from mild/moderate asthmatics who weren’t controlled. Said I need to put up with the thrush and keep taking my prescribed inhaler, as it’s so risky not to. I guess you just get used to it, feels normal after a while!
Re : Thrush. If you are using a spray (pMDI) inhaler, a spacer could help to reduce thrush also ask your doctor about Ciclesonide - an inhaled corticosteroid that doesn’t cause thrush. ( as I said it doesn’t come in a combined inhaler with a long acting reliever) so if your doctor thinks you need that as well, a separate additional inhaler would need to be prescribed).
And of course ask for your blood sugar to be checked because that ( & a few other conditions) can increase the chance of you getting thrush)
Yep Daktarian gel is soothing & tastes like chocolate orange! But it takes weeks for it to go, I’d rather avoid if I can. I never had it before powder inhalers.
I also used to manage my thrush with oral Daktarin, but in the end our local very good pharmacist and also the surgery got so concerned about how often I used it. I was changed from Symbicort to Fostair with a spacer to reduce risk of oral thrush, However, when I am on the bigger dose of Fostair in wintertime I still do get thrush occasionally, but only very small patches which I brush off with my toothbrush when brushing my teeth, and then of course rinse, rinse, rinse. Not a perfect solution but I haven't needed any kind of anti fungal, like Daktarin or anything else for a couple of years.
My surgery just changed my prescription from ventolin to salamol, which suddenly stopped working at all after 2 weeks I have to send it to be tested as I was so concerned about this that I filled in a yellow card report. When I ordered my next prescription I put on the notes that I want ventolin as the salamol is unreliable. (The receionist said I could request ventolin if I didn't get on with salamol when I rang to ask why I had a different inhalo). After my request I got this text from my surgery
Dear Mrs Walker,
Ventolin inhaler is no longer allowed on the NHS as part of NHS green agenda.
Airomir and Salamol are the only alternatives .
We have switched you to Airomir as you are struggling with Salamol.
Merridale Medical Centre
No one has spoken to me, no one has asked what the problem was, I didn't struggle with the salamol it just stopped working.
I'm so annoyed that I have been treated like I don't matter and the inhalor they prescribed in this text wasn't even available at any local pharmacys so they had to prescribe an auto halor.
I've never used one of these, and in another text (again no one bothered speaking to me) they just advised asking the pharmacist to show me. When I asked at the chemist I saw the pharmacist tell the lady on the till how, then she showed me. After watching a video I realised she had shown me wrong. This has all been so stressful, I also just felt like giving up on my inhalor
That is awful, I’m sorry this happened to you. I can understand the feeling of giving up; I felt the same.
The NHS should be putting clinical needs first - not the environment- and explaining to patients what/why/how f2f. You cannot put someone on a new medication by text- that’s negligent! Especially a life threatening condition where rates of uncontrolled are high. Shocking!
I’ve just collected a new Ventolin from the pharmacy, so it’s definitely still available on the NHS in this neck of the woods. My prescription is actually for a generic cfc free salbutamol inhaler, but it always seems to be Ventolin.
I did move here with my records showing I can’t take dpi inhalers - don’t know if that’s made the difference.
”Ventolin inhaler is no longer allowed on the NHS as part of NHS green agenda.”??? Try as I have, I can’t find any confirmation of this. Hate to say it, but I think your surgery is misleading you!
I think you are right. It sounds like GPs are being motivated to refuse to prescribe it. It's probably why my health care seems to be suddenly via text messages, and when I mention it at the pharmacy, they say they have ventolin in stock but can't use it without patients being prescribed it. 🤔
There are LOADS of asthmatics who can’t tolerate powder inhalers, myself included. No matter how fine the powder, it irritates my lungs & make me cough and wheeze, which is obviously counterproductive. I think you need to explain very clearly to the GP that powder inhalers make your asthma worse. You won’t be the first whose told him/her this
Thank you, I had no idea it was a common issue. I will be sure to be more specific and hopefully after I’ve spoken to the helpline, I might be able to ask about some alternatives.
I have this problem too. I agree that calling asthma uk is a good idea, they are very knowledgeable and will speak to you for as long as you want , unlike the gp who gives you ten minutes.
My hospital consultant put me on fostair 200/6 powder better for the enviroment inhaler back in May , my asthma been so badly managed ever since .My gp this week put me back on a spray inhaler and its so much better already .
Consultant at respiratory clinic said they were trying to get everyone moved over to powder as better for the enviroment ,but it just seems to clog in my throat and i feel it is contributing to my constant "gunky throat /voice problem".
Yes they give me a hoarse voice (I only mentioned the thrush because it’s intolerable). I often pitch for a living so it’s not great having a weakened voice.
People don't realise how these things can affect your mental health when they go on and on. I use symbicort BUT I use only the pressurised container NOT the powder. I cannot use those powder ones at all and requested the pump version. Symbicort do both versions so I suggest asking for the pump version. I also use a spacer to get more into my lungs. You shouldn't have to use the powder if it's not right for you.
thank you for sharing your experience and advice about the equivalent spray inhaler.
I was properly crying yesterday when I picked up my prescription, sounds pathetic but I just feel I’m not being listened to. It really can affect your mental health living with the symptoms, gets you down.
I need to empower myself and not be so passive/ expect Drs to know what is best for me.
It's not pathetic at all. I've cried over my asthma a good few times. You could even go down the angle with the drs that the powder isn't working for you and tell them it's affecting your mental health. It's not confrontational or demanding to tell them these things. It's your life and it should be as happy as it can be. Can you imagine spending the next however many years feeling like this? You'll feel so much better and happier when you get the right inhaler for you. I was instantly happier ☺️
maybe take someone with you next time who knows what you want to say. Then they can prompt you/provide support if things aren’t going as you’d planned.
I'm afraid there are some times when you have to insist and persist in insisting. I have an aerosol inhaler having failed dismally with the powder ones and now you have to fight the eco excuse as well. I do my best on the eco front, but I refuse to give up my Fostair, because it works! You're in the right. Be strong and if necessary take someone with you for moral support.
Yes, you’re right. Coming onto this site/forum was the first step in this. I need to gather my own knowledge and then work with the GP to get what’s right for me. There’s no continuity of care at my very busy practice, I know the GPs are doing their best in difficult circumstances.
I had the same problems when I was younger , the ventolin inhaler was the best one for me , I have tried the powder one never worked at all , I was also given this tiny in haler that was better for the environment but it was useless I would switch to another surgery and try to speak to a asthma specialist
Have you seen the asthma nurse at your practice or only the GP? If just the GP, can I suggest you ring and ask to book an asthma review with the practice nurse? I spent two years trying to get a diagnosis and one year trying to get the right medication from GPs, but I only really got sorted when I had my first meeting with an asthma nurse. I don't know what it's like in other surgeries, but in ours, the GPs are using really out of date ideas about treating asthma (that's not me, that's what the helpline told me!) but the nurses are much more up to date. So you might find it more helpful to see the nurse.
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