Personal spirometer, refused Xolair

[runcyclexcski]

Does anyone here own a personal spirometer? If yes, are you happy with it, and how much did it cost? Does your consultant trust your own measurements, or is she/he dimsissive?

My clinic is a 1 hr drive for me, thus, I get loaded with Ventolin before committing to the drive to see their consultants (which can be in the cold/snow/heat etc). I feel safer this way, and also it's because the air in the lung clinic is horrible (opening the window is the only ventilation method for them).

So.... on my last visit they surprised me with a bronchodilator test (which they never warned me about in advance), and took spirometry before and after giving me Ventolin on-site. They did not tell me not to take steroid tablets, steroid inhalers and bronchodilators in advance (which my previous proper consultant would always tell me). I told them right away that the test was flawed, b.c. I was already after a nebulizer dose. Surely, there was no differnece in spirometery, and they refused to write down in the report that the test was flawed.

Then the consultant who administered the test (and who changes every time) used the "result" to claim that I in fact had no asthma (which I had for 20 years), and that I should not be receiving biologics (I have been recieving Xolair for 20 years). I am not sure what to do -- complain to her department head? Complain to the government? Change clinics? Sue for malpractice? This is when the idea of my own spirometer came to mind -- so that I can do spirometry before and after a bronchodilator at home.

Now I have about 3 months left of Xolair to find a solution. I have tried stopping Xolair twice before, and both times have been horrible. In fact, I can feel it towards the end of the injection "cycle" that I need it (every 2 weeks).

I used to have a portable spirometer about 20 years ago for which I at the time paid ~$1.5K. I can't find it anymore (had 10 moves since then), and I can't remember who makes it. It could have been a MIR spirobank: the current ones look sort of similar to the one I had (although modern ones have more functions).

I apologize for the long message, folks.

[Homely2 Administrator]

I, for a while, used a basic 50 pound Microlife monitor that does peak flow and Fev 1. It was fine.

Whether your consultant, will or will not, pay any attention to your readings, is a matter of chance, some will, some will not.

I would though kick off by putting something in writing immediately to the senior respiratory consultant at your hospital, by email and letter. Make it simple, just say the results are meaningless as you had taken all your normal drugs plus ventolin pre the test, thereby invalidating the result, so you need to be retested before being taken off Xolair. Do not complicate it with your own test results, yet.

If that fails, where I live, I would go and see my GP, with my own results, he knows nothing about asthma, but he knows all about NHS bureaucracy and politics and how to get things done.

If all that fails I would see one of the senior local respiratory consultants privately.

Some people, have used Pals, for issues, but this is outside my experience.

Hope this helps and best of luck.

[runcyclexcski in reply to Homely2]

Many thanks, Homely! I am after the FEF25, 50 and 75 numbers which show <50% predicted when I do poorly, and it appears that only costly spirometers take these measurements. At least the price for these devices has "stayed" at the 2007 levels -- i.e. they got 2x cheaper, considering the inflation. Still, it looks like they are at least 1K.

I am currently requesting a copy of the letter made by the last consultant (which she never sent me) -- so that it's not a "he said/she said" situation. The idea of seeing my GP and then seeing a private consultant is good; I am in fact trying to get a referral right now.

[peege]

Just massive commiserations on a really crappy experience and result re Xolair. Wishing you the best in getting this sorted. P

[Troilus]

Yes. I have one. SpiroHome. Had spirometry at the hospital and came home and repeated it on my home device and it was near enough the same. I bought it from Amazon - ages ( 4 or 5 years ago) I can’t remember the price, but it wasn’t too bad.

Quickly did some research (searched the name to check I had remembered it correctly and this came up.

Nope. No joy. For some reason I can no longer post links. It was basically saying that the results were reliable

[EllenBristol]

It seems you are not based in Uk and the conditions for biological medication is very different to the US, we are advised not to take inhalers prior unless absolutely necessary and as you said inhalers/nebulisers on hand if needed.

[runcyclexcski in reply to EllenBristol]

Thank you, Ellen. I first got diganosed in the US, and, like you said, they told me to stay off medication prior to tests (UCSF and Stanford). May I ask for how long they advice to stay off medication? A day would be easily doable, but longer than that might be a challenge for me, but I would commit to it if necessary.

[EllenBristol]

These are the general guide lines , hope these help

How do I prepare for my lung function test?

Do not smoke or vape for one hour before your test.

Do not consume alcohol for at least eight hours before your test.

Avoid vigorous exercise for at least one hour before your test.

You can eat and drink before your appointment, but please avoid eating a large meal within two hours and avoid foods high in nitrates such as green leafy vegetables and beetroot.

Wear comfortable clothing which does not restrict full chest and abdominal expansion.

Your height and weight will be measured, please wear shoes that are easily removed

If you currently take a short-acting bronchodilator inhaler (for example, Ventolin (salbutamol), Bricanyl, Atrovent), please avoid taking this for at least 4 hours prior to your test.

If you currently take a long-acting bronchodilator inhaler (for example, Fostair, Serertide, Serevent, Symbicort, DuaResp, Foradil, Oxis), please avoid taking this for at least 12 hours prior to your test.

If you currently take any combination inhalers (for example, Spirvia Respimat, Dulkir Genuair, Flutiform, Onbrez, Relvlar Ellipta, Seebri, Trimbow, Trelegy), please avoid taking this for at least 24 hours prior to your test.

However, if you are feeling very breathless then please take your inhalers as normal and let the physiologist know when you last took them.

for the test

[runcyclexcski in reply to EllenBristol]

Ellen, this is great, many thanks for sharing! Not drinking prior to the test is hard, but should be doable. I will just have to refrain from my usual morning gin and tonic :).

[Lysistrata Administrator Community Ambassador]

I'm sorry you had that experience, that's so frustrating! And really bad practice - these tests are NOT reliable as you say if you've had no warning that you needed to stop treatment.

It seems very silly to spring a test that requires medication withholding on someone without warning. It would be like telling someone with an appointment at 10am that surprise! we're doing fasting blood glucose, oh look you're fine, no we won't account for the fact you had breakfast 2 hours ago and a latte on the way in because the test wasn't mentioned.

Just a random example, though bet it's happened. I once had a hospital asthma nurse randomly test my cortisol at 11am - not even the right time - with no warning. Then she told me that my levels were fine and I didn't need hydrocortisone. I had trouble staying polite when I pointed out that obviously I had already taken the morning doses and would hope it was fine! She hadn't even ASKED if I'd taken it! Thankfully nothing was done because she wasn't even in charge of that side of things - I was under endocrinology.

In this case I agree with Homely2 that you should register a protest at how this was handled. I hope it gets resolved.

I've only used a basic spirometer with peak flow and FEV1. No one told me I should use different techniques for the two and it caused a load of trouble with my consultant deciding I couldn't even be trusted with manual peak flow. He won't budge still even though the other team members are ok with my technique.

[runcyclexcski in reply to Lysistrata]

Many thanks, Lysistrata. It's good to know that I am not unique in my experience. It is quite appaling how flawed their decision making process can sometimes be, but I also understand that they only have 30 min to make a decision (in my research, I sometimes work on a problem for 10 years full time).

I do not want to be a difficult patient, and I try to follow their recommendations and advice, but I sometimes wonder where I would have been with my asthma if I hadn't had a biochem degree...