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what happens when you take the wrong inhaler for too long, I can share my experience

Lemonade91 profile image
20 Replies

Im an adult woman, diagnosed with asthma in my late teens. Had several hospital stays in my life with an ICU admission under my belt too!

I want to share my experience of taking the wrong inhaler when I should have stopped, I don’t want to put anyone off - I’ve read some people (more infact) that have had great experiences with the culprit. Unfortunately my asthma has always been a bit of a pain to treat and I am really prone to side effects from other medications.

my last medication was the clinel modulate (brown inhaler) 200mg x two puffs, twice a day and the Serevent 25mg two puffs, twice a day (green inhaler, long acting reliever) and a blue Salamol. All of my inhaled meds have been taken through a spacer with tidal breathing.

I was moved onto fobumix following an emergancy GP appointment. The GP didn’t explain that it was a powder inhallation and I didn’t realise until I got home and went to use it. I ended up watching some videos online to work out how to use it.

The first week was fine. I wasn’t convinced by it.

The second week my throat started to become a bit sore, I started gargling salt water and mouthwash and thought I was comming down with something.

Third week, throat is very, very sore. Feels raw. I’ve started drinking lots and lots of water to offset it. If I take another cough sweet I think I’ll be sick. My sleep started to become disturbed. No other cold and flu symptoms so I start to think that it might be the inhaler.

Fourth week, I have an appointment with the asthma nurse at the surgery. I’m eager to speak with her because I’m sure something is wrong. The appointment was awful, honestly it felt like a sales pitch for this inhaler, she was telling me that she’s an asthmatic and she loves it, it’s so much more convenient and I don’t need a spacer! She did a very dramatic demonstration of how she uses it. She tells me that if I keep taking this medication eventually I’ll be able to stop the asthma medication all together (??? No one has ever said that before, only that I’d be able to control it). She upped the dose and told me to come back in a year. She said the sore throat was definitely not caused by the powder inhaler and I likely had a viral infection that would clear up on its own. I was so tired the whole appointment I just couldn’t fight her, I left feeling really lost and confused. I remember texting a friend that night saying I started to feel like I was living in the twilight zone because of the lack of sleep.

I started taking the increased dose. I cannot express how painful my throat became. That night I barely slept and spent most of it pacing the lounge. I worked from home the next day, completed all my phone calls before taking the next dose, I called the asthma uk line and spoke to an amazing nurse who confirmed that it likely was the inhaler but there’s a big push on GP surgeries to move asthmatics onto powder inhalers as they have low CO2 emissions, she said most asthmatics get on well with the powders but unfortunately some don’t. At some point an admin called me and when I answered the phone, no sound came out. I had to use so much pressure to get my voice out that I just sounded like I was making squeaks. I decided to go to the pharmacy - it was gone 2pm and I knew the surgery would be useless. I must have looked such a mess in the pharmacy, crying at this poor old pharmacist who couldn’t understand a word I was saying, I had to write on paper. He called the surgery and kept asking to speak with the GP but there’s a big receptionist said I needed to call 111 or call tomorrow for an appointment. The pharmacist said he was half tempted to tell me to go to A&E.

I spoke to my dad that evening who was worried as I sounded really breathless - though I felt okay. He took a look at the inhaler and asked why on earth they gave me this, he talked about how years ago after an admission to hospital I was treated by respiratory in out patients and that they had tried then to get me on powders and it hadn’t worked, he did unlock a memory of those appointments and what happened when I moved onto the spacer with the tidal breathing techniques. I’ve been prescribed them a couple of times and almost always taken right back off them - it’s frustrating that no one ever explains why. My understanding is that some of us just don’t have the respiratory strength to pull the powder inhaler into the lungs.

That night I didn’t sleep at all. I worked from home the next day and texted my boss to say I couldn’t take any calls. I managed to get the surgery to get a GP to do a telephone review (I wasn’t allowed to have an appointment as I’d been seen two days prior). I was explaining the situation and had another speech about how the powder inhalers are better for the environment. My voice was so hoarse I’m sure I sounded absolutely rabid on the phone but I did manage to get her to move me back to MDI inhalers. She prescribed the luforbec and made a follow up appointment with a different nurse at the practice.

through the day I felt the effects of the previous inhaler wearing off and my voice getting better. I was so exhausted I don’t remember what I did at work that afternoon. That night when I finished work I went to bed at 6pm. The next thing I knew it was 11:15 the following morning. I’m fairly convinced the issue was the steroid sitting on my throat as I’ve had insomnia on steroid tablets before.

I do have a pretty gnarly cough on the luforbec and from reading some of your comments I think I have a fair but in common with some of you that can’t tolerate the powders (I feel so vindicated that people out there agree with me that the Ventolin is different to the Salamol! I’ve been convinced for years I could blind pick ventolin out of a lineup!) I’d love to try the Fostair and see if that deals with the cough issue but the luforbec is night and day compared to the fobumix and I don’t know if it’s a war I’m willing to wage on the GP surgery over it!

Do take my situation with a grain of salt, I am someone who does seem to be particularly sensitive to medication! This is not the first time I’ve reacted to meds!

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Lemonade91 profile image
Lemonade91
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20 Replies
Patk1 profile image
Patk1

You've been treat badly.in future refuse any suggestion of powder inhalers.i hope u settle on lufrobec.if not,if yr asthma was well controlled on previous regime,u may have to insist that's best for you,or request a trial of fostair . As far as save the planet goes, u need inhalers that work for YOU.we r all different - one size doesnt fit all. I've always used roll on antiperspirant- perhaps use that+ point out what other sprays u don't use eg air freshener,hairspray etc etc.

Lemonade91 profile image
Lemonade91 in reply toPatk1

I hope I settle on the lufeobec too but I’ll give it a few weeks trial, the coughing might subside

Good point about the sprays too! I use very few sprays, I can use some “wet” sprays like a spray antibac for my hands so long as it’s not heavily scented, most household cleaners I struggle with! I can’t use powders either, no talc, flour, carpet powders etc or I’ll be coughing and wheezing all over the place!

Patk1 profile image
Patk1 in reply toLemonade91

Exactly! So yr carbon footprint is very low already ))

Ern007 profile image
Ern007 in reply toPatk1

Roll on under arm makes me itch Pat - I Use Right Guard Spay, works and does not make me itch x

leo60 profile image
leo60

That is disgraceful! I am all for doing what I can to keep my carbon footprint low, but we need an inhaler that works for us, and if it's not the green one, then so be it!

You have been treated very badly and I think a complaint to the practice manager would defo be in order.

I hope you're ok now? All the best, Laurie xx

Lemonade91 profile image
Lemonade91 in reply toleo60

I did contact the practice manager and she sent me a copy of the complaints form but by that time I’d been moved onto another inhaler and given a follow-up appointment with a different nurse, I’ve written everything down so I can address it at the next appointment

leo60 profile image
leo60 in reply toLemonade91

Well done you! Xx

Mopsey1897 profile image
Mopsey1897

that nurse is so stupid. Just because she likes it, doesn’t mean that it will suit you. I also suffer awful side effects from meds and when I used a salamol inhaler I thought I was going to pass out - sweating, feeling very nauseous and needed a loo urgently. Luckily my consultant believed me and said I was obviously very sensitive. Don’t give up and fight for what you need for your health, stuff saving the planet!

Lemonade91 profile image
Lemonade91 in reply toMopsey1897

Goodness I hope you’re feeling better! That sounds like an awful experience

From what I understand it’s only a small number of asthmatics that can’t take the powder inhalers so we shouldn’t be making a big dent in the carbon footprint!

Mopsey1897 profile image
Mopsey1897 in reply toLemonade91

I’m fine thanks, only lasted about 25 minutes then I felt ok thank goodness.

Alberta56 profile image
Alberta56

If powers that be really wanted to save the planet, they could do something about the amount of filth spewed out on our roads every day. (Even electric cars are not entirely guiltless.) It's not fair to badger lung patients who need inhalers a great deal more than some folk need their gas guzzlers.

Lemonade91 profile image
Lemonade91 in reply toAlberta56

Are you suggesting that the rich and famous don’t use private Jets and consider how their actions impact others rather than concerning themselves with the small number of people with lung disease who need medication that may contribute to a small number of CO2 emissions 😮

I am with you! It’s very infuriating!

knitter profile image
knitter

my asthma nurse always gives me a choice …powder or aerosol. NICE also says patients should get what is most suitable .

By the way , I and my family suffered from very sore throats and flu symptoms recently, swallowing felt like razor blades .

I tried Serevent years ago, didn’t suit me at all . Fostair neither . Tried Trimbow , peak flow went down .

I hope all goes well for you , best wishes

Apollomycat profile image
Apollomycat

You should put a complaint in to your practice manager of the surgery for the terrible way you have been treated.

Gummybearx profile image
Gummybearx

That's appalling, I hope you recover from the experience and the affect it has had. I was asked if I would switch and I refused, I remember taking powder form years ago and it didn't work. I hope that whatever you use works for you. It should be our choice not theirs.

Collienut profile image
Collienut

The nurse shouldn't have dismissed your symptoms and should have known it was the powder causing it, that level of being dismissed was unacceptable.

I was put on a powder inhaler when they first came out and my lungs reacted to it as an allergen and I got worse, they tried to put me on one again a couple years ago but I refused and was prescribed Fostair instead.

Hope you feel like yourself again soon. xx

Ergendl profile image
Ergendl

That's appalling treatment! Thanks for sharing your timely message. So many of us have to fight for the right medication to suit our bodies, not some green agendal.

Didgeydo profile image
Didgeydo

Hi,I am an OAP, and have had asthma since a fortnight old ,so I have had it all my life I am in my late 70s,I was given the powdered one and it burnt my throat,I also have Bronchitecti plus other arthritic problems. I reported the locum doctor who administered the powder inhaler to me and I had a long time in hospitals because of it. I am now on fostair and carbocisten . The GPs do not seem to have the care that they used to do,and we know our bodies better than they do I hope you soon improve. I found to cut up a Spanish onion with tablespoon of brown sugar and a chopped up garlic clove,some people have added three tablespoons of alcohol. Seep overnight then take 2 tablespoons of the juice twice a day this helps your throat and also helps to dislodge phlegm.

Izb1 profile image
Izb1

It seems the powers that be have decided to force us onto powder inhalers, its like big brother. Last year I went to see a bronch specialist who did a host of tests and found I had overlap asthma . My breathing was pretty bad and I had a terrible problem with excess mucus. She put me onto Fostair Nexthaler which was like a little miracle my chest was easier and my mucus production calmed right down, but I ended up with a cough due to the powder. She put me onto Fostair but the chemist sent Luforbec , when I questioned this they said they dont issue Fostair anymore and Luforbec was the same but cheaper. I have tried this for a couple of months and my cough and tightness is getting worse. I requested a different inhaler from my gp and she sent a text to say the pharmacy will ring me today. I will see what she has to say. I am sensitive to alot of meds and react badly to some. I have tried a few different inhalers and not sure where I go from here. I hope you get some relief from Luforbec and is suitable for you, good luck x

jackwok profile image
jackwok

I was put on lurfobec by my surgery as it was a cheaper option. Gave it a whirl and didn't like it. Spoke to my GP and no hesitation in switching me back to Fostair. Then had a spell in hospital and was given Trimbow. Am really happy with this.

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