Immunological Markers

[Glty]

Hi all,

I've received a confusing letter after my last frustrating consultant appointment.

The consultant states that my Immunological Markers show that I don't need to be on high dose steroids. What markers are these? The only blood tests I've had done whilst in this flare was when I was also on pred. I'd assume the markers were suppressed on pred? Otherwise I did have a panel of tests done in September whilst well controlled, but would question whether these give much info 6 month's later whilst in a flare up?

In reality (which my consultant doesn't want to hear about) I found the pred really helped and I was having issues reducing the dose on my GPS schedule (5mg every 3 days) with symptoms returning and peak flow affected. The consultant asserts I don't need the pred and it's long covid not asthma, however ventolin does give me good relief from symptoms and my peak flow is also affected. I did have long covid breathlessness over the summer and it feels quite different to asthma but she didn't seem to hear this.

I am managing to reduce the pred by using lots more ventolin and I'm not spiralling down into the red zone but I am now symptomatic and needing ventolin most days. I have a GP appointment tomorrow to discuss but would appreciate any insight on the immunological marker statement above.

Thanks!

[Melanie1989]

Hi Glty,

The markers I think they mean are eosinophil, however blood eosinophils can't really tell you about pred effectiveness and is highly likely they were suppressed on pred. They would normally perform a test called FENO which measures airway eosinophil levels. You can have normal blood tests but have airway eosinophils. Airway eosinophils show wether or not pred will be effective.

I however am one of the weird rare cases with low blood and airway eosinophils but still react well to steroids 🤷‍♀️ Have you had full lung function tests? I would possibly seek a second opinion as asthma is very complex and a lot of resp consultants are more specialist in c.o.p.d and fixed obstruction. There is a possibility of asthma/long covid crossover, but the fact that ventolin helps definetly indicates asthma is a factor.

Is peak flow a reliable indicator of a flare for you? If it is then I would keep a peak flow diary as evidence and note any triggers down to.

Hope you get somewhere, unfortunately asthma is far more complicated than resp consultants sometimes realise and many have to fight to get the right treatment!

[Glty in reply to Melanie1989]

Thanks Melanie, that's pretty much what I was thinking wrt the markers.

I do keep track of my peak flow as it's a great indicator for me, it tends to drop before I'm aware of issues so is a great early warning for me. Unfortunately my consultant doesn't get that peak flow is personal. My personal best is 630 but she wants me at the predicated value of 400 and doesn't agree when I say that at 400 I'd be really struggling 🤦🏻‍♀️. Unfortunately, she's also refusing to refer me to an asthma clinic as she doesn't think it's asthma, she's currently seeing me in a long covid resp clinic.

I have had lung function tests, CT scan with contrast and gas exchange tests back in September, which was the only month in the past year I've been well controlled. All were fine so that's good. Unfortunately I did rather too well on the lung function tests which has confused the issue and they refused to do reversibility as my numbers were already high.

[Melanie1989 in reply to Glty]

Ugh to the lung function! The fact that your peakflow is higher than normal, means your lung function probably will be to, so if they done reversibility it's possible you could of had significant reversibility. I hate when they do this at lung function tests! It also depends on the day as you may not have been symptomatic that day.

Trying to say you should reduce your peak flow to the average is ridiculous, it's like trying to tell a tall person to shrink to the average height!

Peakflow is a great indicator as well towards asthma, so it concerns me this is being ignored. Your G.P should be able to refer you to the asthma clinic or at least a different consultant as unfortunately I've learnt from experience the consultant rarely changes their stance. Her asthma knowledge sounds questionable putting it politely! I would just say communication between you and your consultant has broken down and you would like a second opinion.

[mylungshateme in reply to Glty]

To this day I've still not had reversibility test as my numbers also near perfect, so why go higher than that? Was the consultants response when I argued I need reversibility and reminded him my p.b now is 400, but a few year ago would have been between 5.50-6.30. Therefore my new p.b is actually not good. He wouldn't have it. It's like talking to a brick wall...sorry for that little rant!! I agree what melanie said and pred would suppress any inflammation as that its job!. X

[twinkly29]

Regarding the pred reduction, can you ask GP if it can be slowed down? Maybe smaller drop sizes or over say 5 days instead of 3 each time?Fortunately my GP is brilliant and understood that I need it to be different to the norm but also immediately said everyone is different and that below 20mg often needs to be slower than whatever someone was doing above that. So might be worth asking about that?

[Glty in reply to twinkly29]

Yep, the consultant's plan was to drop 5mg a week till 10mg, then 2.5mg a week, I've got down to 10mg now but still struggling with symptoms most days and overnight, not escalating but enough to worry me about reducing further. It's definitely better than a month ago but I still feel that I'm probably not on enough preventer but at the limit of what me GP can prescribe.

[Lysistrata Administrator Community Ambassador]

I don't have much to add to what Melanie and Twinkly have said, which is all great and I completely agree with it - especially re asthma being more complex than some drs admit!

I especially feel for you on this: In reality (which my consultant doesn't want to hear about).

I've met way too many consultants like this! And I do find non-asthma resp consultants (and even sometimes the ones who claim to be interested in asthma) really overestimate their grasp of asthma, like Melanie says. It sounds like you have a good handle on telling what's asthma and what's residual COVID, but this cons is clearly not having it - seems a bit like because she runs the COVID clinic everything has to be that!

I still find her stance on peak flow completely ridiculous and just anti-science really! I agree that if your GP is sympathetic perhaps explain the problem and ask if you can see someone for the asthma side of things.

Re the eosinophils, it might seem obvious but apparently she's not the best with logic: the fact that you struggle to reduce pred suggests it helps, and the pred is suppressing the eosinophils. This is not the same as my situation, where I'm not on pred and they're still normal, so it seems likely that actually that just isn't the type of asthma I have. I also don't respond to pred, so I'm fine with not having it (less fine with the assumption from my cons that only eosinophils/allergic markers are 'real' asthma).

Your cons's view seems a bit like saying oh we have a fire engine with a load of hoses spraying water on the burning house, which is putting out the fire, so actually there never was a fire to start with. (Ahh, fire metaphors: the gift that keeps on giving for discussing inflammation in asthma 🤣🔥)