sassy598 months ago

Hi Kismet, sorry to hear things are a struggle at the moment. Pete has a home nebuliser and uses salbutamol to open up the airways before using the three other nebulised drugs. He certainly would be unhappy without his nebuliser which he uses twice daily. Xxx

O2Trees8 months ago

I think home nebulising of Salbutamol is mostly used with acute flare-ups in hospital. I used it in 2018 when I was hospitalised with pneumonia x2 and respiratory failure so serious it was thought I might not recover. So of course they threw everything at me including nebulised salbutomal at home while I was recuperating. It did help along with other medications which I no longer need.

So i would say your team is correct about it being used in hospital but not at home, but having said that we are, as you say, all different. And if you need so much salbutamol that it is making you shake I would be wondering (if it was me) whether the trimbow or another preventative inhaler with steroids in it should be increased to deal with inflammation in the lungs, so that you would not need so much salbutamol. Salbutamol is classed as an emergency medication and not designed to be taken in large amounts on a regular basis.

But Im not medical, I dont know you, and of course I could be totally wrong. But have a further chat with your team. Good luck!

Hidden8 months ago

I use biosodinide and berovent through a nebuliser six times a day to help me breath and it works. I started twice a day one file of each then three times but I have small cell lung cancer and been updated dosage of both and on six times a day which keeps me ticking . So yes nebuliser is a good idea.

Alberta568 months ago

Sorry to hear you're so bad. I don't know anything about nebulising, but I'm certain you shouldn't need so much salbutamol. You need to talk to your medical team. PS just a thought: are you on Ventolin or one of the cheaper substitutes? The salbutamol is the same but the propellants don't work nearly so well

Bevvy8 months ago

I have a nebuliser at home but only usually use it when severally unwell. That is under gp instruction and is 4X daily. Occasionally I do use it when I feel blue inhaler not sufficient, if doing that more than once or twice I will start to consider using rescue pack of antibiotics and steroids. I have had nebuliser at home for many years now and am very used to regime of when and how to use. Also know when I need to call for additional medical assistance.

Many people can’t have a home nebuliser and doctors give very good reasons for this. I was recommended to have a home nebuliser by a very proactive gp, who helped me far more than any consultants I saw. Home nebuliser has kept me out of hospital a number of times but I still get monitored closely by GPs. That might mean gp visits every 2-3 days when extremely unwell which is probably more than I would see a doctor if admitted to hospital!

I do agree with other comments that you should go back to gp to discuss rescue inhaler usage. In fact am surprised this has never been queried and you told amount going to be restricted! There are very many different inhalers and possibly a different one will suit better. Often it is a matter of trial and error to find an effective inhaler because it is such an individual process.

knitter8 months ago

I was authorised by my consultant many years ago now , to use a nebuliser at home .The nebules have to be prescribed .

But I only use mine in an emergency , or on the odd occasion just a couple of breaths when my chest gets tight .

One of my gps doesn’t advise them for home use , others are ok with them …..they trust me to know when I need professional help in A and E which is only 5 minutes away .

It looks like you are using nearly one inhaler a week…..I would go back to your GP and ask for further help .

ALUK have a helpline for UK residents open during the working week on 0300 222 5800

Shrimpy-13-22-258 months ago

Hi, sorry to hear that you are struggling so much Kismet. I’ve had a home nebuliser for 15 years now and wouldn’t be without it. I’m prescribed to use it 4 times daily, taking Salbutamol and saline plus one other if required, though as soon as my chest eases I reduce the dose. Please discuss your salbutamol use with your doctor or asthma nurse asap as it seems very unfair that you are struggling like this. These days, as the wise Littlepom reminds people, you have to be proactive. Best Wishes

Alice708 months ago

Hi kismet ,I could of wrote your post ,I was complaing for an age that trmbow wasn't helping as it should ,the effects of it was only lasting a few hours ,so I was using more Salbutamol than I should two puffs of Salbutamol had no effect on me so I was taking four puffs at a time ,I asked many times could I take an extra two puffs of trimbow in the afternoon,always told no ,for the past 17days I've been prescribed fostair and spiriva, I had to go to private consultant to get it ,as I was using fostair four years ago 100/6 and tolerated it new consultant put me back on fostair only this time 200/6 ,I can't say how much it has helped as I've only been on it 17days ,I have a slight chest infection at the moment ,I'm wondering if the change over of meds have caused ,but not half as bad as my usual chest infection not as much inflamation, I see this consultant agian on Monday as he ordered more tests ,I will see what he has to say,oh and I asked about home nebulizer always no ,only used in hosptal

doc1947g8 months ago

Maybe you should use BRICANYL instead. For me it was a fantastic trade off,

Kismet23 in reply to doc1947g8 months ago

Thanks....unfortunately I struggle with powder meds eg Fostair, but I will mention this when I next talk to the COPD team.

Thank you to everyone who responded to my post - so very grateful to you all x

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doc1947g in reply to Kismet238 months ago

You do not feel the powder because you inhale it. It is not push in your moth,

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nottowell8 months ago

I have just been given Trimbow and it makes my cough far worse. Does anyone else have this problem. I have also been given ANascys to drink how does this work for others