trouble correlating peak flow with symptoms

[runcyclexcski]

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.

[Homely2 Administrator]

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 in reply to Homely2]

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 Administrator in reply to runcyclexcski]

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.

[runcyclexcski in reply to Homely2]

Homely, they used the "standard" questionarrie that the NHS uses -- "how many times you used the unhaler", "How many times did you wake up breathless" etc.

[Patk1]

Such a worry for you x

[Lysistrata Administrator Community 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.

[runcyclexcski in reply to Lysistrata]

Thank you Lysistrata. I think this is a general problem, probably due to them mostly dealing with "normal" patients who get an inhaler prescription and get on with their normal lives. Anything out of the standard curve they do not know how to (and do not have time to) deal with. Another annoying thing in my case is that the consultant changes every time. It's a German thing. They do not bother reading pages of letters prior to a 15 min appointment.

[hilary39]

There is a lot of growing evidence that severe asthma manifests mainly in the small airways which are not measured by FEV1 or peak flow meters. There is no easy way to measure the small airways--there is one test aside from spiro but it is expensive and clunky and few clinics do it--so the tightness you are feeling is real it just always can't be measured by tests that look at the big airways only. How frustrating and terrible to think that will be tied to whether or not you get a necessary medication.

My peak flow is stable too for the most part and also high for my height but I have severe debilitating asthma and can't go many places and live an extremely limited life because of it.

Yet the current measurements don't capture this well--my eosinophils are low, my IgE is low because I'm on Xolair, my FeNo is normal. The only thing right now that captures it is quality of life questionnaires like the standard 5-question one that measures waking up at night, use of ventolin etc. and there is one for severe asthma that is in use in pockets in the UK that I'd love to see everywhere.

Just saying I empathize! Keep us posted on how it's going.

[Younie]

I am similar to you with a peak flow 70% above predicted. But have this on the studies carried out when well and oficially documented of what they call supra normal lung function. This did cause me major issues and still does as when i am unwell i will hit the predicted for my age/ sex / height but be below 60% for me. I take it from a reply to another comment that it was a questionnaire similar to an asthma quality test which in the UK if you score below 15 it is still uncontrolled. I continue to stay in that area also but the consultants keep trying different biologic medications. Is your specialist possibly thinking of triling a new one? Since 2006 there have been approval for so many more that have been developed for asthma, with some for allergic such as the one you are on, ones for eosinophillic and now a couple that actually can be used for both (tezepilumab and dupilumab). It may be they are thinking along those lines to improve everything for you but to get that they need you off the current one?

[runcyclexcski in reply to Younie]

Thank you Younie. Funny that you mention another biologics. They did try Benra and Dupi in, and I did poorly on both and went back to Xolair (should not have agreed to this). Then I asked the consulant about Tezepelumab and she promised to talk to "her panel" about this. After that she called me and said that not only she won't give me Tezepelumab, but she wants to discontinue biologics altogether. So I should not have even brought this up!

[Younie in reply to runcyclexcski]

Oh wow. So we are a similar boat. I started on Mepolizumab, changed to benra and had terrible side effects, back to mepo then onto dupi, it wasnt effective enough and back to mepo 😂😂, just found out after a recent admission that i will be getting changed to tespire 🙄. Its crazy in a way. But i would be frustrated if they were doing that to me and pulling the one i get on ok with, well in my opinion i do.

[Marktime]

hi, runcyclexcski Does she have some reason to believe that your condition won't deteriorate if you stop taking it? Does she think that you won't need to use inhalers all the time and end up meeting the criteria for getting on biologics?

I'm on Dupixent for excema and asthma, when I am in between doses it starts to wane, and my symptoms come back. I have no doubt what would happen if I stopped. I would also bring up to her that those are monoclonal antibodies and if you stop taking them for a period of time your body can build immunity against them. Research that because that's what they told me about Dupixent and that's a monoclonal antibody.

I hope they get it together there and figure out what they are doing and keep you on what works until there is a good reason to change, like if it stops working for you. You don't have lots of options, you don't want to blow a good one that's working.

[Troilus]

My only advice is for you to record your peak flow on a home device so that when she checks she can see your other results. I have one - SpiroHome which from what I read before I purchased it is recognised as being reliable and used by some hospitals to monitor patients - sorry I can’t remember the details- I bought it about 5 years ago.