A bit fed up: In the context of a... - Asthma UK communi...

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A bit fed up

TeachKat
TeachKat

In the context of a global pandemic I probably shouldn’t grumble, but I’m a bit down after a phone consultation with my gp this morning. My asthma was diagnosed as severe after a nasty chest infection and (mild) pneumonia around Christmas 2019. Since then I’ve accumulated medications - now on Fostair 200/6 2 puffs twice a day, montelukast, Spiriva Respimat, Uniphyllin Continus 500mg a day and Ventolin as a rescue inhaler. I’ve been struggling since the weather got cold - coughing in the cold air, waking at night with a tight chest, morning drop in peak flow and needing ventolin most days.

The doctor this morning offered me the choice of continuous oral steroids or increasing the uniphyllin until it helps but wouldn’t say which he thought would be better. He said it was a choice between feeling jittery and trembly now (uniphyllin) or risking long term side effects from oral steroids! I asked if I could try a short course of steroids but he said that was only appropriate for a flare- up of normally well-controlled asthma but not for me as we still hadn’t achieved control of my asthma.

I opted for the uniphyllin but it’s a bit depressing as it really affects my sleep badly. Sorry for the long ramble! I just needed to have a moan.

29 Replies
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The thing is (and I know you know this, it's just rubbish hence you being fed up!) it's either of those or actually be in a worse situation.

Just make sure they will keep an eye on your theophylline levels as it can become toxic which is dangerous. I think they're meant to check bloods a certain time after increasing a dose to check it's in the ok range.

TeachKat
TeachKat in reply to twinkly29

Thank you - I do know that of course but- grr! I do worry a bit about blood levels, especially as the information leaflet says older people might need lower dosages. Does 63 count as older? I’ve never had a blood test to check. I’ve to ring the gp in a week’s time to tell him how it’s going.

EmmaF91
EmmaF91Community Ambassador in reply to TeachKat

If you’ve never been checked, how does he know a higher dose will help? Theo is one of those marmite drugs I think - for some it really helps, for others it seemingly does nothing. You only increase the dose if you’re levels are untherapeutic (below 10). You are already on a relatively high dose, and have constant side effects, so it’s unlikely your levels are low.

Please tell him you’ll report him if he doesn’t refer you. Think of it as if you’re in school you have an undiagnosed deaf kid with ASD in your class, and you refuse to get them any official help cause you’re refusing to tell your headteacher/the kids parents etc that there is an issue. You just give them things that you (untrained about specific ASD and deaf aids for the classroom) can think of without understanding them properly. How much trouble would you get in to if you never reported? How much does the kid struggle and suffer with no support? And why would someone do this? - because their ego is too big to know when to ask for help. Rn you are the kid and your GP is the crap teacher, refusing to tell anyone else your issues. A referral (esp to an asthma spec hosp) would be like get you an assistant whose entire life is about deaf kids who ALSO have autism.

Don’t let the GP ruin your quality of life just because of their arrogance (no matter how nice you think they are)

TeachKat
TeachKat in reply to EmmaF91

Thank you again! I think I’ll have to speak to a different gp in the practice to get anywhere. I also rang the Asthma UK helpline and I’m waiting for a call back from a nurse.

twinkly29
twinkly29 in reply to EmmaF91

I've also regularly been told (by different resp consultants) that under 10 is still perfectly ok and that 5-15 is actually a better range than 10-20.

EmmaF91
EmmaF91Community Ambassador in reply to twinkly29

I heard 7-15 and that at 9 they were perfectly happy to leave it (at 7 they may increase if patient was having asthma and no side effects). This was a asthma specialist hosp. ‘9 has a better result to 19 as usually better control with less side effects ans much less risk of seizure (from toxicity)’

twinkly29
twinkly29 in reply to EmmaF91

Yeah if mine was 5 I'd be unimpressed! But absolutely would rather it was say like 8/9 than 18/19.

twinkly29
twinkly29 in reply to TeachKat

Absolutely agree with Emma.You need a referral. Your work would be more understanding if you were under a consultant I'm sure - which you more than need to be for your asthma. If won't refer you, go to the practice manager.

EmmaF91
EmmaF91Community Ambassador

I agree with twinkly - watch out for toxicity levels. If you’re already having side effects your levels are probably already close to being toxic, so make sure you get them checked.

Also I would demand he refer you to a hosp (local or asthma specialist) now, and tell them you’re going to report him if he doesn’t - he is not following best care, and on those drugs you shouldn’t just be under GP care. For all he knows you are eligible for a bio which could completely fix everything, but it is literally impossible for him to prescribe them!

Claire_AUK
Claire_AUKAdministrator

Hi TeachKat, sorry to hear this. Are you under a specialist for your asthma at the hospital - such as a tertiary centre ? Ideally your specialist should be helping you make these decisions about your treatment rather than GP. asthma.org.uk/advice/severe...

TeachKat
TeachKat in reply to Claire_AUK

Thank you for replying- I haven’t been referred - the gp maintains that there’s no point at the moment because of the pandemic. I’ll keep asking to be referred- it does get rather wearing! I am also concerned about not having blood levels of the uniphyllin checked, especially as I am older (63) and not very big - do height and weight affect levels? It’s harder to push for things when all appointments are by phone !

Claire_AUK
Claire_AUKAdministrator in reply to TeachKat

You absolutely should be referred ! Do you want to ring the helpline and chat to one of us nurses about it, we can help empower you to get what you need 0300 2225800 M-F 930-430

TeachKat
TeachKat in reply to Claire_AUK

Hi, I rang yesterday- I was told someone would ring back today. 🤞

Claire_AUK
Claire_AUKAdministrator in reply to TeachKat

I have sent you a PM 👍

Bevvy
Bevvy in reply to TeachKat

To be fair to gp I was referred back to respiratory clinic I am already under as an emergency last February. 3 days before appointment in March it was postponed due to Covid. I had a telephone appointment in September. Consultant agreed I need a face to face appointment. And should be seen in 3 months. My surgery nurse chasing appointment. SO nearly a year after needing to be seen urgently due to significant ongoing breathing issues I am still waiting!!

TeachKat
TeachKat in reply to Bevvy

Yes, I think that’s partly why he doesn’t want to refer me because the wait is so long- but it would be good at least to be on the waiting list! I hope you get seen soon!

twinkly29
twinkly29 in reply to Bevvy

There's a difference though in having to wait like you did (which is rubbish but understandable) and the GP being so blinkered or arrogant that they think they know better and refuse to do it. Using covid as an excuse is, in my opinion, ridiculous. People all over the country are being referred and not everyone is having to wait ages. The likes of Asthma UK actually want people referred who need it because that's what will hopefully be a step towards controlled asthma.

Sorry that's a bit ranty.... I'm just really cross at Teachkat's GP.

TeachKat
TeachKat in reply to twinkly29

It’s lovely to have moral support! I keep starting to doubt myself and think that I’m being feeble or fussy about the asthma. The gp is quite a bit younger than me - I shall have to start calling him ‘sonny ‘ or ‘my dear’. Seriously though, I’m going to speak to a different gp at the practice tomorrow- if I can get through. 🤞

twinkly29
twinkly29 in reply to TeachKat

Please do. If no joy then practice manager. And you have lots of support here!

TeachKat
TeachKat in reply to twinkly29

Which I really appreciate!

Brilliant - I’m phoning now!

You are welcome to bitch and moan anytime! It only makes me love you more. Me, right now I’ve got one of those heart monitor things strapped onto me because I can’t tell if a-fib is causing asthma or if the asthma is causing a-fib. Sometimes it’s hard to know if you’re on death’s doorstep, or just have a little anxiety. And I really don’t feel like the doctors know either.

Hello. I feel your pain regarding waiting times. I am a 63yr old female with relatively well controlled asthma for last 40yrs until it threw a major hissy fit in June last year. GP struggled with it then referred me to hospital chest clinic. 16th October had a 10 minute phone consult, various different inhalers tried, none of which have helped. Main symptom is hacking chesty cough every day from dawn to dusk. I was supposed to get a follow up phone call on 16th December but heard nothing. On chasing things up by phoning the hospital the waiting times have "got a lot longer" and no idea when it would be. In desperation I phoned the consultant's private clinic, and hey presto - I can have a private FACE TO FACE consult on Thursday next week. I begrudge having to pay as it's going to be a struggle to fund it, but if it gets things sorted out!! The private clinic are also offering Spirometry and Lung Function testing, but my GP surgery keep telling me they aren't allowed to do them because of Covid19 regulations🙄. Off to flog a few things on Ebay now to get some cash😂😂. Hope you get sorted, hang on in there xxx

This is quite probably wrong but my breathing was so good before a serious virus just after Xmas in Jan 2020 , lots of people had it and it was a nasty one. Since then my breathing has been very bad. I must say it was just before Covid went public but I have a sneaking suspicion that possibly both you and I and others need long covid taken seriously. Keep plugging on and hope things improve with the spring on the way . Hope you get better advice from a more qualified person. Take care x

twinkly29
twinkly29 in reply to Dizzart

Not sure if you've seen it or know of it but Asthma UK have a post-covid hub (0300 2225942). Am sure they are more than happy to talk to possible-covid people and probably have spoken to many.

I imagine it's also useful for them to build a picture of people's experiences - and also issues that people in your "maybe I had covid" position (I'm sure there are a lot as I do think people had it before it was official) may actually be related to having had covid and not actually asthma related. For some anyway, some it might be a mixture of course. But if many people do have long term symptoms that are like asthma but not asthma, then they also need support for that specifically - not to be treated as asthma symptoms if they're not. Not sure if that makes sense 😬 but it might be useful to talk to the nurses?

I have wondered about Covid too! Hope you feel better soon.

Hi there. What is Eeze and where do you get it from please?

Hi teachkat. I echo the others in pushing for a referral. I was finally referred in early October and I haven’t heard anything yet. I live in hope and, as others have said, at least I’m on the list 🤞. Good luck xx

TeachKat
TeachKat in reply to Jollygood

Thank you!

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