What is my next step in terms of treatment?

Hi there :)

I would like to hear from anybody else, who is in a similar situation to me, and what your next steps have been in terms of treatment and such like.

I have had asthma all my life, but it has gotten much worse in the past 6 months. I have been signed off work and have had hospital admissions and been rushed to a&e totaling 13 times now in the past 5 months.

I have been so many courses of Prednisolone I have lost count, and also had Singulair, but to no avail. I am now on Xolair, the injection to treat against allergies.

The problem is, I feel as though I am hitting my 'head against a brick wall', as I feel no better, and it is affecting quality of life. The doctors, nurses and specialists have been wonderful, but in all honesty, a long course of treatment has not been suggested and it is extremely frustrating.

I

would like to hear from anybody who has been in a similar situation to this, where did you go from here? Did you complain to an NHS Headquarters? Did you get to go to a specialist hospital? Any information/stories would be wonderful!!!

3 Replies

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  • Hi there

    I can completely sympathise with you - I have just escaped from hospital after 2 admissions in 4 days, and have a large dent in my forehead from banging it on the self same brick wall! Although there were issues with the treatment I got in A+E, I am not going to rant, I'm sure we all have horror stories, unfortunately.

    One of my asthma nurses today suggested that I might be a Xolair candidate and to mention it to my consultant, but I'm not holding out much hope as I dont think my asthma is particularly extrinsic, i.e. allergic, as it's things like aerosols and cold air that trigger my attacks.

    Sorry I haven't seen able to offer much advice, but a quick look at your profile tells me that there are more things out there that could be tried I reckon (though I am certainly no expert, just similiarly stuck in a black hole of asthma treatments!) for example, have you tried Symbicort, or Ciclesonide? Ciclesonide isn't used too often I don't think as it's brand new I believe, and is a steroid inhaler that is only activated when it reaches the lungs and so is more gram-for-gram potent than others I believe. I found it made quite a bit of difference when added in on top of my Symbicort (plus a load of other asthma meds.)

    I've never been to a specialist hospital with my asthma, and the consultant I see isn't at a specialist tertiary referral centre (although I live in London and so the Brompton is around the corner), but I am lucky to have a fantastic GP and asthma nurses.

    Sorry for the long reply, hope it makes sense, I'm surviving on very little sleep! Feel free to PM if you like

    Emz x

  • Thank you very much for your message, has shed some light!! Went to GP this evening, and suggested being referred to Brompton etc to explore other avenues, so that's great news.

  • That's brilliant news, good luck with everything!

    Take care x

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