Hospital again

[Bubblybird]

Hi all,

I have had asthma for 22 years but since April 2014 i have been diagnosed with brittle asthma.

I have today been discharged from hospital again, was initially admitted to ITU for 48 hrs then to the ward.

I was trialing xolair as i have many allergies, but this has been stopped as it was not working. Although it did reduce the number of asmissions and level of severity.

The team now want to revisit a lot of tests for other conditions that could be triggering my symptoms, like tests for reflux, reducing my steroids (which is great) having physio for breathing techniques and looking at vocal chord dysfunction.

They are also saying my feno is low so shows low inflammation in my lungs.

I juat wondered whether anybody else has any other conditions that induce their asthma, or are your numbers still within range and feel unwell. I am feeling very low after this admission and alone.

Sorry for all the questions

[justTUX]

Hi,

Im sorry your asthma has been so rubbish and you have been in and out of hospital a lot. Xolair doesn't always help people even with allergies which is annoying but there is a new one mepolizumab which is at the end stages of trial which is good for eosinophilic asthma (allergy driven).

I have been told a number of times that I seem to feel a lot worse with attacks than I should but I don't think Drs understand its not often just the one attack but its an accumulation of everything and a struggle for longer than just the attack.

I do FeNo and can find that it can be lowish but this is when I am on higher doses of steroids. When you had your FeNo done were you on lots of steroids etc as this can give a false low because the steroids are reducing the inflammation in your lungs. I do my FeNo every 2-3 weeks and find it can vary a lot between morning and night and also on what steroid dose I am on. Your FeNo could also be low if you are allergy driven and not under attack from allergies and then would have less inflammation.

Take care and hope you feel better soon and pick up a bit!!

Any questions just shout.

JustTUX

[Bubblybird in reply to justTUX]

Hi justTUX

Thank you so much for your reply, all my feno tests have been done when i am on either 30 or 40 mg of pred.

I am sure i will pick up, just been overloaded with lots of information ths time, and attacks do make me feel low.

Thank you again!

Bubblybird

[kimmy22]

Hi - loving your username. I understand everything you say except for the feno (I've never heard of that) .

I too have brittle asthma but also hv vocal therapy for vocal dysphasia. I have a cpap mchine got nighttime which helps my breathing. And counselling for anxiety. I also have lanzoptozole to stop the acid reflux. All of the above are triggers for my asthma and all affect me every day. Vocal therapy is very good - it teaches me to breathe correctly from my belly - rather than from my upper respiratory system. The theory is that any improvement that can be made to any of the secondary problems this will in turn help my asthma. The Vicious circle of breathing issues.

[Bubblybird]

Hi kimmy22

Thank you for your reply, sorry to hear you struggle too. Just anxious about the tests and really want some answers.

Feno is a breathing test you do that tells you how much inflammation is in you lungs.

Thank you again

Bubblybird.

[juliesharp]

I have a low feno too. Mine is only 7. I have just been changed from prednisone to hydrocortisone. I see a physio for hyperventilation. I have been breathless for nearly a month. I just started a course of antibiotics. I been given Gaviscon to take for a month.

Can we feel alone and unwell together?

[kjt229]

Hi there,

Can I ask please have u always been a brittle asthmatic or were u asthmatic before this diagnosis? Did it change?

Thanks