Another bad hospital admission.

[wheezy01]

Back home after another rather terrible hospital admission. Another time in resus and the first time icu was a legitimate option if I didn’t respond. This is my 3rd resus in 6 months. I’m on Xolair still and a little worried that my consultant will just want to continue with the xolair despite the overwhelming evidence that it isn’t working.

Anyone got any tips on how to get my consultant to listen to the fact that my medication isn’t working. He just sings its praises every time despite telling him how ill I have been. This was a really scary admission for me as it’s the first time ICU was seriously considered, I only didn’t end up there as it was full and someone else was much more ill than me.

[emmasue]

Wish I could help. Can only offer sympathy. I would try the Asthma UK helpline. They may offer advice but of course they aren't available till Monday.

I am not as bad as you, but I have been on antibiotics for three days and still feel no better. I have a raspy wheeze and an oppressive cough. I am trying to decide what to do next.

Anyway, hope you get somewhere with your consultant and hope you feel better soon. x

[HungryHufflepuff]

That sounds so awful, I’m really sorry to know you’re having such a horrible time. I would agree with emmasue who said to phone the Asthma U.K. helpline, this is what I will be doing too, thanks to advice from people here. I was changed onto fostair earlier this year which totally isn’t working for me. Apart from the fact I said it’s not working, all the evidence is screaming that it’s not working. But I just get told how wonderful fostair is and everyone else is really happy with it. Also I had my Ventolin inhaler stopped when I was put on the fostair inhaler so I have nothing that works, except having just finished a course of Pred which I was given because I couldn’t breathe.

I don’t know how to get your consultant to listen to you, but I’m hoping someone at the asthma helpline will be able to give me some advice and facts so that I might have something on my side to back me up, and I hope it will be the same for you. I’ve never phoned the asthma helpline before, so I don’t know what to expect and it feels a little daunting but I think it’s something I need to do. I hope they will be able to give you the help you need too.

[emmasue in reply to HungryHufflepuff]

The Asthma UK helpline nurses are lovely. Think of it as calling a friend when you need advice. Don't feel daunted. I can't recommend them enough. Beautiful women, all of them. 😊

[Lysistrata Administrator Community Ambassador]

Ugh this sounds frustrating! I am quite surprised your cons is so set on Xolair despite it not working, as usually you are meant to stop it if no response after a certain time. How long have you been on it now?

I agree about ringing Asthma UK; you could also see if there is any official NHS or NICE guidance on what is considered success or failure that you could then show your consultant and say you have x admissions in this time compared with y admissions off Xolair.I personally think quality of life between admissions is important, but have found cons tend to pay more attention to number of admissions etc and that was also the primary endpoint in the trials of Xolair and the newer drugs as far as I know, so makes.sense to use this to show it is not working for you.

These drugs are not cheap plus may have side effects, so there is no point being on them if they aren't helping. Especially as this is preventing you finding something that does work - one of the newer drugs like.mepolizumab may be a much better option for you.

[michemoffatt]

Sorry to hear about your awful time. Sounds like t was frightening.

the Omelizumab (xolair) is beneficial if your IgE levels are elevated, and that is a simple immunology screen to ascertain. If no response, you are within your rights to say you don’t want this.

Monoclonal antibodies are wonderful if they’re indicated, but are not the appropriate choice for all / I’m sure you consultant will have done your bloods etc?

What other medications are you on? Have you been assessed regarding your steroid / long acting beta 2 meds?x

Are you in corticosteroid? Have you have your eosinophil count checked - for severe eosinophilia asthma, there is mepolizab but is very different from omelizumab.

Also, there are leukotrine receptor antagonists (montelukast) and the likes of also theophylline oral meds.

Consultant can review all meds x

I’ve been I thbatex several times, and I really hope you don’t have to go down that route being tuned in ICU - it’s not a pleasant experience to have a respiratory arrest and waken in icu.

Ask your consultant for advice and to make a plan x

[cathmc58]

Years ago my hospital changed my inhalers to combi for a months trial after less than 1 week I couldn't walk more than 3ft I rang my gp who told me to stop all use and go back on to old faithful I did years later I'm on max dose of everything tiotropium, salmeterol, salbutamol, clenil modulate, theophyllin, and montelucast, but hey I can breathe and only occasionally get admitted to hospital where I end up with nebulizer steroids antibiotics and oxygen. Remind consultant what suits one don't suit all. Xx take care and don't be afraid to say NO