Can someone clarify the asthma situation?

[Iremembertheelderlykoreanlady]

At first people with asthma were in group 6

Then they weren't

Now apparently people who use a brown preventer inhaler are back in group 6.

I used to use a brown inhaler but was using my blue one too much (asthma was not controlled) so they moved me to symbicort which is a combined inhaler.

So am I on the list for group 6 or not, as I don't use a brown inhaler anymore.

Does anyone know or could link to the guidance?

My current GP has no record of an X-ray with lung scarring indicative of Pneumonia. I felt like he was accusing me of lying!

He was also dismissive when I told him that the asthma nurse mentioned further investigation for COPD (December so not long ago). My peak flow rate is so low - around 300. According to the chart that gives me the lungs of an 85 year old (I’m mid-forties). He was dismissive of that too.

All he was interested in was that my asthma is currently controlled.

It’s very much a lottery.

Thanks pawsin. It's strange as I'm in the NE where we are supposed to be blooming amazingly on top of this! My Gp friend said it would be happening over the next week though but he's a different health trust, though still NE. We have moved into over 65s.

Congratulations though!

I have a Gp appt today and will ask if she knows anything.

@Takemebackto98 I'd call asthma U.K. about that and speak to asthma nurse again. A friend had similar and is now under consultant care.

I wasn't diagnosed properly at first, just handed a blue inhaler (despite continued coughing stopping with oral steroids) and when I finally made an appointment with the asthma nurse (I had to request one and had a chat over the phone as technically I wasn't allowed as not then diagnosed) she marched out and told the Gp off for not doing proper investigations ( he's lovely but clearly clueless about asthma.)

@WarriorN Thanks, that’s a good suggestion.

I was fobbed off for over 20 years by various gps at different doctors surgeries because I never get the wheeze. I‘d just be sent away with antibiotics time and again.

I was only diagnosed 5 years ago but even then it was very much a case of here’s a brown and blue inhaler off you go.

I have asthma and have just been offered the vaccine (I have brown and blue inhalers). I was surprised as at my last asthma check the nurse said I was controlling it very well. However I have booked in my vaccine because 1) whenever I do get colds they often leave me very wheezy, and 2) I work in a school so am pleased I’ll have had the vaccine before they reopen. I know it’s only 1 dose, but it’s some protection at least. (Loads of our pupils had Covid in December so was feeling a little nervous about going back).

I was originally suspected of having asthma as a child but not diagnosed until I was 29.

At 11 my PE teacher told my mother I was showing symptoms and needed to see a GP. I don't remember exactly what test the GP did - I think where they see how you breathe and then give you a load of blue inhaler to see how it improves. He told me an improvement of 12 was asthma but as mine was only 11 I didn't have asthma. He also said if I had asthma it would have been picked up before then (ha!)

I then started flagging an issue with breathlessness from the age of about 21/22. Told it was just me being 'unfit'. Then it was attributed to another condition. I was told by more than one GP that I couldn't have asthma without a wheeze when I said I thought I had asthma. Again, issues attributed to being 'unfit'.

Eventually my breathing got so bad with a bout of bronchitis that I was given clenil and ventolin. I was told to use them when better to see if my general symptoms improved.

Thankfully I took them on holiday to somewhere with a lot of pollution as my breathing got so bad DH and I looked up where the local hospital was and how to say 'I think she has asthma' in the local language.

When I got back I finally saw an asthma nurse who diagnosed me very quickly. He believes I had asthma as a child - I have a history of long lasting coughs, chest infections and I have eczema and hayfever.

I fear there are others out there who haven't managed to get a diagnosis yet or who are being as dismissed as I was.

On the plus side the asthma nurses at my surgery are fantastic. Since my diagnosis my care has been excellent and they quickly put me on the add ons I needed - montelukast in particular has made a huge difference.

Shame about some of the GPs at the same surgery. The one who told me very firmly it wasn't asthma does have the grace to look a bit abashed when he refuses me other meds 'because you're asthmatic'.

I'm sorry take, definitely speak to asthma U.K. first then approach a good asthma nurse.

I don't wheeze either (till I was extremely unwell with loads of inflammation and liquid in my lungs and only then occasionally) which is why diagnosis was hard here too. I've definitely had it very slightly all my life but only ever coughed and had endless coughs with viruses. And hated smoke with a passion. I now know cold and some chemicals, fine sawdust, are triggers too. And pollution. But I just cough. A lot.

My peak flow was about 380 till diagnosis. On Fostair it can be as good as 450. Clenil had it at 420.

*380 as a daily normal, not particularly exacerbated. Would only go to 340 when bad. So I've never been classed as severe.

But the lack of energy and brain fog was awful.

I’ve had similar issues with accessing suitable asthma treatment. I was diagnosed aged 14 and pootled along happily for years and years with ventolin and the brown one. Then aged 26ish I was put on seretide. When I had both of my children my asthma seemed to almost disappear for a few years, and during that time we moved GP surgeries. The new GP absolutely refused to accept that I had asthma and said I’d been diagnosed and treated wrongly. During that time, with no asthma meds, I had several almighty chest infections that each took at least two lots of strong antibiotics to sort out. A couple of years later we moved down here, where we’ve been for the past 7 years, and I didn’t even bother mentioning asthma to my fabulous new GP practice but I carried on having some spectacular chest infections. A year or so later the asthma nurse phoned me out of the blue and asked me to come in “because from your notes you very clearly have asthma”. She was that the previous GP had refused to give me any medication. Since then I’ve gradually moved up the meds to stronger and stronger stuff and am now on ventolin, duoresp spiromax, montelukast, tiotropium and frequent prednisolone. I’m also seen by a resp consultant. I’ve been shielding and had the jab in group 4. I can’t help wondering if my asthma wouldn’t be classed as severe now if I’d still had access to asthma medication during those few years and I might therefore not have had so many severe chest infections. Who knows.

It’s really helpful actually to hear of others’ stories of being fobbed off for not having the wheeze. My annual, endless cough every is triggered by a cold, and the asthma meds barely touch it. Stupidly it hasn’t really occurred to me to push for more help due to the long history of being fobbed off.

@WarriorN It’s really encouraging to hear that with the right meds your peak flow can be increased and I’m going to try to contact Asthma UK today for advice.

Does anyone know if your peak flow rate is your lung capacity? When I mentioned to GP that my lung capacity looked like it was 75% of what it should be he told me that was ridiculous and I’d have been urgently referred if that was the case. Left me even more confused!

I also want to track down my lung X-ray that showed scarring as I’m sure he didn’t believe me on that one either!!

Take, I started having strange bubble sounds in my lungs after second child which initially thought was an infection but antibiotics and 2 rounds oral steroids given by the gps did nothing for.

Peak flow around 400 so not necessarily a "clinical" (?) issue. At an asthma review the nurse suggested a long acting bronchodilator inhaler which is two in one (steroid and a long lasting ventolin) and it's been great ever since. I'd like to try the lower dose steroid (100/6) but not risking it till I've had my jab.

(I do think taking Vit d regularly has helped with shaking off chest viruses better too. Some research shows this is the case.)

Everyone is an individual though and what works for one may not for another. But asthma U.K's helpline nurses are definitely a really amazing and can be so helpful for seeking correct support at the Gp.

Also, the asthma nurse at my Gp practice who did the last reviews on the phone is now also a qualified pharmacist which I think is interesting. (As in, she was a pharmacist who is now employed as an asthma nurse.)

Good luck Take. I think the terminology may be different re lung capacity etc. But asthma U.K. will explain better.

@WarriorN

*380 as a daily normal, not particularly exacerbated. Would only go to 340 when bad. So I've never been classed as severe.

But the lack of energy and brain fog was awful.

I had an unscheduled asthma review over the phone last week which I thought afterwards was suspiciously timed to see who needs the jab. She asked me to check my peak flow and I recorded 340 as best attempt. I'm 42.

I didn't really think anything of it as I don't track it so didn't occur to me that wasn't normal. She even suggested I could probably drop down to 2 puffs of clenil a day instead of 4 as I seem to have it controlled. I'm now wondering if I should query that advice and now feeling quite worried! I'm generally healthy but as with most moderate asthmatics, a cold knocks me out for 3 weeks or more.

V at other's experiences with asthma care. Blooming heck.

But also sort of not surprised given my own.

Think I may set up a direct debit to asthma U.K.

@Takemebackto98

My current GP has no record of an X-ray with lung scarring indicative of Pneumonia. I felt like he was accusing me of lying!

He was also dismissive when I told him that the asthma nurse mentioned further investigation for COPD (December so not long ago). My peak flow rate is so low - around 300. According to the chart that gives me the lungs of an 85 year old (I’m mid-forties). He was dismissive of that too.

All he was interested in was that my asthma is currently controlled.

It’s very much a lottery.

You should be getting investigations. I have a peak flow reading of 320. My specialist got me to do a spirometry test which indicated that I had 40% lung capacity. He put me on flutiform, Ive been breathing a lot easier, I didn’t even know that I wasn’t able to breathe better, that’s how it always was. I also find that GPs know nothing about asthma. The asthmas nurses are always getting me to take it more seriously. They understand asthma a lot better. I did my annual asthmas check up with a GP previously, it was a ticking exercise

@Wandamakestoast

I have asthma and have just been offered the vaccine (I have brown and blue inhalers). I was surprised as at my last asthma check the nurse said I was controlling it very well. However I have booked in my vaccine because 1) whenever I do get colds they often leave me very wheezy, and 2) I work in a school so am pleased I’ll have had the vaccine before they reopen. I know it’s only 1 dose, but it’s some protection at least. (Loads of our pupils had Covid in December so was feeling a little nervous about going back).

@Wandamakestoast that's great news! Did you contact your GP to ask about the vaccine? Like you my asthma is fairly well controlled and I also work in education (nursery). I'm so anxious at the moment about it all!

Floof, everyone is different though it's very hard to discern what is normal. I have a non asthmatic friend who is v sporty and just has a naturally low peak flow. She had some sort of health check at work and they actually tested her for asthma as it was low but tests showed she was fine.

When my peak flow was around 380 pre clenil I was waking to cough at 2 am every night and not sleeping well, coughing every time there was an air change, the tiniest whiff of smoke, chemicals etc so they do look at the whole picture of symptoms too. I remember coughing non stop for 24 hours after the boiler was changed due to the smoke from the welding. At the same time it's definitely worth double checking these things and making sure you do have correct treatment.

(all this I learnt from asthma U.K. nurses simply as I was struggling so much and only started getting anywhere when I discussed everything with them.)

@Floofsquidge when I get a cold the cough lingers for months. When all those adverts came on saying coughing for 3 months could be a sign of cancer (and everyone at work kept going on about cough at work), I asked a GP and she said it’s normal for coughs to last that long. Of course in Lockdown I haven’t had a cold. So haven’t coughed for over a year. And I can breathe properly.

@Wandamakestoast Can I ask where you live? My husband has quite severe asthma (has taken oral steroids many times) but he hasn't been called up yet. Was hoping he'd be done soon

Oh I’m on flutiform with mild asthmas and got sent notification that I can have the jab.

I do find though on the current inhaler that coughs don't knock me out for 3 - 6 weeks though. Maybe 1-2 max. So it's always worth chatting through with someone, perhaps asthma U.K. first.

This thread has promoted me to email me GP, pointing out my hospitalisation and asking them to confirm I’ll be in group 6.

And one of my best friends with NO underlying conditions, who’s also in her 40s, got invited today, which also strengthened my resolve!

My husband is on occasional ventolin only and has been invited for a vaccination. I have clenil and ventolin and end up on oral steroids every time I get a cold. I have not been invited. My peak flow is 320. We are both mid 40s and I’m older. Same GP surgery. He’s got no other underlying conditions. I don’t understand!

@Smellybluecheese

My husband is on occasional ventolin only and has been invited for a vaccination. I have clenil and ventolin and end up on oral steroids every time I get a cold. I have not been invited. My peak flow is 320. We are both mid 40s and I’m older. Same GP surgery. He’s got no other underlying conditions. I don’t understand!

Weird isn't it?

My friend was invited and had theirs last week - we know each other well and he says his asthma is as controlled as mine is. Same GP practice but I haven't had a message to say I can have the vaccine