Peak flow doesn't very much

[netochka]

Is there anyone else here who has fairly normal peak flow that doesn't vary much and yet can have violent cough and need prednisone regularly for chest infections that get out of control (with only occasional and rare wheeze)? I always understood I had cough variant asthma that is vicious and sometimes controls my life, but my new surgery are telling me I don't have asthma. I am waiting to see a specialist and being kept on lower-dose steroids, LABA and Montelukast. Any ideas?

[Minushabens]

Is your cough productive or dry? If your peak flow doesn't vary then it might be the case that there's an entirely different problem with your lungs. Best advice really is to let the consultant do what they need to do & hopefully you will get some answers.

[netochka in reply to Minushabens]

Well I know I'll be seeing a consultant when a few months have passed but I had always understood peak flow wasn't a universal thing for asthma. Doctors haven't really minded it before and I'd like to know a lot more.

The cough is generally a bit of a wet one but can be outright productive or fairly dry. It is a distinctive bark that often becomes very violent and can lead to vomiting or wetting myself. I'll also be very breathless and occasionally I wheeze. I'm usually given prednisone, sometimes amoxicillin (though I don't think antibiotics are here nor there). Sometimes I suppress it with codeine linctus too, and I use 'burst therapy' with the blue inhaler in a spacer.

[Minushabens in reply to netochka]

I hope that the consultant makes some progress for you as that sound very unpleasant. I'd keep your mind open to possibilities beyond asthma because whilst your correct about peak flow, it is still an important diagnostic. Hopefully you will be offered the usual range of x-ray, ct scans, blood tests & so on to rule in or out other possibilities.

Good luck

[Mark_in_Wales_CVA]

Hello Netochka,

welcome to CVA (cough variant asthma), this has only recently been recognised as a variant of the asthma family and some people in the health profession are still non-believers I'm afraid. To describe how I believe that CVA qualifies as an asthma is best put like this - if you had a 'normal' cough, you would cough out to try and clear something (a tickle, or phlegm) and when you breathe in after the cough there is no restriction, for my CVA when I cough out all is relatively normal, but when I breath back in again all of a sudden my breathing is restricted (this is the asthmatic element of the cough). I also find that if I have a heavy coughing fit that I will wretch (dry vomiting). I also found that I coughed when I yawned, even when I laughed.

Like yourself my PF varied very little - but it was varying (lower in the morning than evening). My GP was very good and said straight away "you have asthma" and then set to work on the causes. My main cause is acid-reflux, as a result of eating the wrong (acidic/spicy/cafeinated/chocolatey) foods. So I take Lansoprazole to control this when it flares up. I also have inhaler steroids (Bricanyl/Fostair/Montelukast) to support my chest.

Have you managed to work out what is the trigger for your cough? A lot of people have the acid-reflux issue, some it is allergies, humidity, perfumes, pollution, low-humidity, cold weather....the list is almost endless. In terms of the steroids I am trying to get to a position of fixing the cause and then lowering the steroids dose. Because of my acid-reflux often it looks like I have a chest-infection (wheezing/increased cough), but in-fact I am having acid issues due to stress/bad-diet.

I would suggest try to pin down your trigger/s and see if there is something else which can reduce their effect, have you got an Asthma Nurse at your GP surgery, they should be aware of CVA and perhaps they need a genuine case to educate them.....?

All the best,

Mark

[netochka]

Thanks Mark. It's good to hear from other people! Clearly if we don't fit the pattern on some laminated handout then we need to have thought things through for ourselves... I am open to another diagnosis (my mum's ended up as bronchiectasis), but I think cva feels like the closest fit.

I have struggled all my life -- undiagnosed as a child (coughing at night and during exercise to the point that I just couldn't run), then since diagnosis 1998-1999 as an adult with lots of ICS.

My main trigger for complete quality of life deterioration is any viral infection of the respiratory tract (sniffles or a head cold), though recently I had a bout that might have been triggered by gastroenteritis if that is possible.

Minor triggers for a mini-attack are exercise (running for a train or walking uphill), cigarette smoke (so much easier to avoid these days), cold air (I used to keep a scarf over my face in winter). If already under the weather I can be affected by excitement, walking (or walking and talking simultaneously), lying down.

I do have some heartburn so open to exploring any GORD connection.

Typical symptom monitoring at GP's is questionnaires asking how often you use Ventolin, but my problem is that between bouts I only need it in response to the minor triggers, which I mostly avoid (and often don't bother with Ventolin -- I cover my mouth, stop and calm my breathing gradually, have a strong coffee, use cushions, change my environment etc instead). If I'm using Ventolin regularly then I consider my asthma to be out of control because it will only take a sniffle to turn me into something from a Victorian novel with a hacking, retching, miserable bed-ridden condition.

I also tend to come to the surgery as an emergency as my condition deteriorates without much warning (well I feel rubbish before it starts but there's nothing like peak flow I can monitor officially). That means I see a random GP.

A locum GP was very concerned by my condition when I came in poorly and the asthma nurse at my follow-up visit said based on her account that I had brittle asthma and wrote in my notes that when I am good I'm fine, but when I'm bad I'm awful. Then I saw a different GP when less bad and she had doubts and subsequently the same asthma nurse started asking if I had psychological problems and said I shouldn't be on so much ICS, etc etc. It turns out the 2nd GP is the respiratory lead for our practice!

[netochka]

Oh yes and I forgot to mention the mega-trigger: winter! I reckon mostly in summer if I avoided very dusty-earth environments I could live fine with no inhaled steroids at all (but would still struggle on a small scale with a mini-trigger like running for a bus).

[Mark_in_Wales_CVA]

Wow! Consider another Asthma Nurse. Or give them a very last, last, chance.... My practice has 2x asthma nurses, maybe yours is the same? She is right on one thing though if you can reduce the ICS without it affecting your cough (particularly if you identify your trigger), its always a good thing. I know a lot of people here have spoken to the Asthma UK nurses and they are often very good on advising how to deal with difficult health staff. Do look at the GORD, even if you don't feel you have a major heartburn issue, you'll be amazed at how little acid can trigger an attack of coughing.

[netochka]

I'll ask the consultant about GORD when I meet him in April.

The nurse is nice and clued-in but what strikes me in that they don't look back in the notes beyond the previous doc consultation -- hence a complete turnaround in advice and outlook as well as diagnosis!

I think the problem is that in winter if I'm not on enough ICS things get out of control very quickly -- any trace of a virus and it's a lost cause and loads of prednisone needed to get on track. Hence the nurse describing it as "brittle" (which seems like an overstatement to me as I don't need oxygen or the like!).

The good news is that Montelukast (since Sept) does seem to be changing this.

I spoke to an asthma uk nurse when the practice started questioning my diagnosis and she was adamant that some people do need that much ICS and that my normal peak flow and intermittent wheeze don't mean that I don't have asthma. She was supportive but all I can do now is wait for the consultant and hope for clarity.

[pucageorgie]

If you respond to bronchodilators then it's more than likely asthma. (I'm exactly the same as you by the way, and have been assured regularly by my consultant that it is in fact asthma.)

[netochka]

Thank you for the comment, pucageorgie! It sounds from your hospital episode and familiarity with A&E that you have had a worse time. (Actually the respiratory lead is doubting me partly because I've never been hospitalised! Though I've often been given the talk about how close I might be to that and it's possible have sat through symptoms that might have been treated more aggressively in a hospital -- I've never thought of it and don't usually feel in danger so probably not bad enough). But it is reassuring that you recognise these patterns.

Hoping it will be asthma (maybe a bit of GORD) because it definitely isn't my imagination and that of those around me -- and most of the alternatives are worse!

The fantasy of course (and I bet for all of us) is some mild thing that can be put right with a small intervention and then all this will be over!

[C_atergin8T]

Hi Netochka, I wanted to respond to your post which was 3 months ago so I hope you're feeling better. I've got asthma (CVA), worse at night and first thing in the morning, which is associated with GERD or GORD (gastroesophageal reflux). You are fortunate that you have an asthma nurse in your practice as visits to the GP are usually rushed. Interestingly some of the causes of asthma can be:- allergens, infections, cold air, air pollutants, some medications, stress, sulfites and GERD. I've had my allergies tested and there were none specifically so I discovered that it's GERD and emotional stress plus I have hypothyroidism.  I use Salamol for asthma and I'm trying to sort out my diet but if that fails I've been offered Omeprazole for the GERD. All these visits to the GP are stressful and time consuming unfortunately.