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trouble correlating peak flow with symptoms

runcyclexcski profile image
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I have naturally big lungs and my baseline peak flow is 850 which is 25% higher than predicted for my height, age and gender. My specialist accepts this (took her a while) and now wants me to bring her a diary of my peak flow variations from day to day. She threatens to stop giving me Xolair is my peak flow is stable and/or not correlated with symptoms.

Right now I feel stable (I am super-careful and paranoid, wear my respirator everywhere, keep my flat pristinely clean etc). But I still get tight-chested and uncomfortable immediately after outdoor exercise and then need to lie down for 2-3 hrs to feel comfortable again. However, my post-exercise symptoms do not show on my peak flow at all. Instead, the only parameter which is always below "normal" for my age/height is the FEF75 (the "tail" of the spirometry curve -- seen these numbers being 30%-80% of the predicted). Papers say it's due to small airway inflammation. But I do not have a home spirometer, and even if I did I doubt if the consultant would take in that data -- she only goes by the peak flow which really annoys me.

Xolair helps me, and I do not know what to do if she takes it away from me. I've been taking Xolair since 2006, and I wonder if this consultant is responding to a complaint from insurance for prescribing expensive medication. I am currently looking for another consulant, but it takes time.

The only way I can avoid post-exercise symptoms is to ride a stationary bike with a machine that conditions the air to my lungs' liking (temperature, RH, cleanliness). I do this twice a week, but I am now trying to do some outdoor exercise as well. When the air was pollen-free in the winter I was using an air-warming mask, but now haselnut is in its peak, so the air-warming is not enough to keep asthma at bay.

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Homely2 profile image
Homely2Administrator

I am always puzzled by this. The point of asthma drugs is to get your asthma stable, so how do tests on your asthma when still taking effective long term asthma drugs show anything useful.

When I had my main spirometry, feno and blood tests done by a new consultant. Two weeks before the tests they put me on prednisone for five days and got my Asthma thoroughly under control. They then always avoid the question about why the test results are valid given they had made my Asthma OK.

So, surely if you being paranoid re your asthma and Xolair works, then your peak flow will not be very variable? Surely they would have to do a managed wean off Xolair, plus a relaxation in being paranoid and then do the tests for them to be valid.

I would, in your position, want an explanation of the whole logic of this experiment.

Re your chest tightness after exercise, I find my lungs much more achy and unresponsive as time goes by. I play rather non moving tennis on Saturdays, which does my chest and everything in, but not convinced it is asthma. Just feels like my lungs have prematurely aged.

Good luck with it. Could you not find a different consultant?

Or is there a scientific paper somewhere re testing someone for asthma, while they are on effective long term drugs.

runcyclexcski profile image
runcyclexcski in reply toHomely2

Thank you, Homely

I guess I only started feeling sort of OK this winter, but I still avoid leaving my flat at all times and I am nowhere back to "normal" (like being able to work etc). So her logic is that if I do not score above 15 or whatever on her questionarrie, my asthma is still badly controlled despite Xolair. I tried to get off Xolair 2 years ago (she knows about it), and it went really bad (A&E visits etc) and that did show as a dip on her spirometry. I am now finally not obsessing about asthma 24-7 and even manage to exercise in the cold for 30 min at a time, and she wants to take it away from me.

As in your case, she does spirometry while I am on 2 mg pred a day and after I've taken plenty of rescue inhaler puffs before coming to see her (it's a stressful 1-hr highway drive, so I need to be prepared to make it there). The consulant stops short of saying "it's all in your head", but I have heard that line of argument before, and I think I know where she might be going with this.

Homely2 profile image
Homely2Administrator in reply toruncyclexcski

Does her questionnaire differentiate properly between symptoms caused by asthma and symptoms caused by other respiratory issues, or simply by dysfunctional breathing. One of my biggest advances was learning the difference between asthma and dysfunctional breathing attacks, after that completing the questionnaires gave more sensible results.

Patk1 profile image
Patk1

Such a worry for you x

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

Ugh this is really frustrating and concerning for you. I have nothing helpful to add really, other than also asking if you have any other options for consultant. As you probably know from other posts, I also have an unusually high peak flow compared to my predicted. It also doesn't correlate with symptoms for me - neither does spirometry a lot of the time, both ways.

Sadly I have also found they have a weird thing about doing tests when you're ok and treated and then saying that shows no asthma. Like Homely2, I really don't understand the point of trying to prove a diagnosis when already on treatment.

My consultant once got me to do spirometry just before going home from a hospital admission, when I was totally full of asthma drugs and my lungs were actually pretty good. He then wrote in a clinic letter weeks later that spirometry was good 'when acute' so no objective evidence of asthma on admission. Except it WASN'T ACUTE!! The acute bit was 2-3 days before and I had been treated! (And my spirometry that clinic visit was actually not especially good even though I wasn't symptomatic. Which was mentioned nowhere at all.)

I find that they cannot seem to grasp asthma is *variable*. This is annoying enough in a non-specialist, as I found a month ago during a hospital admission. But it's absolutely ridiculous in an asthma specialist - they are supposed to know asthma is variable! (During my admission, both the asthma specialist and the general medic decided that because I was ok when I saw them post-treatment, I couldn't be having problems later in the day. 🤦‍♀️🤦‍♀️)

Sorry for the ramble but this is unfortunately way too common. Though I always thought it was more of a persistent UK thing and I think you're now in another country? So maybe just a general issue.

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