New here -consultant referal - what can I expect?

Hi all, I'm new here. Thought I'd sign up and ask a few things since I've been lurking the forum quite a lot over the past weeks and it's been very useful.

I was diagnosed about five years ago by a respiratory consultant I was refered to due to anaphylaxis/general allergy issues (no allergy specialists where I used to live!), after doing spirometry testing and looking at a record of my PFs, which was a complete surprise - I had no idea I had it. Was put on 100mcg a day of clenil modulite along with strong antihistamines, epi-pens etc, discharged back to GP care, and was absolutely fine until about 18 months ago - used to run 30km a week and had my ventolin inhalers go out of date before they ran out, that sort of thing.

Then for unknown reasons my asthma started getting worse and worse, and now I'm on 2000mcg seretide, plus montelukast, and still having symptoms. I've been on prednisolone twice in the past six months after never having been on it before, most rrcently for a horrible chest infection for the past couple of weeks. My PF is still not great (once upon a time it was about 550, in recent times my personal best has been around 470, and even after my last course of steroids it's still fluctuating from 300-350 at the moment), I'm still coughing lots, and I'm having to get the train to uni instead of cycling or walking as the cold sets me off. I know I've got it a lot better than many people (I've never been hospitalised, for example), but compared to before this is awful :(.

Anyway, not just a vent - today the lovely asthma nurse at my GP surgery decided I was bad enough to refer to the hospital asthma clinic, as I'm still not getting better. Aside from my initial diagnosis (where the asthma was kind of a side issue anyway) I've never seen a consultant for my asthma...what should I expect? What sort of tests will they want to run? The nurse thinks my situation is probably complicated by the anaphylaxis/other allergy issues (although I've not been hospitalised with anaphylaxis for nearly three years) - are there any drugs they're particularly likely to put someone like me on? I suspect my asthma isn't bad enough for me to get Xolair sadly.

It's the asthma clinic at Leeds General Infirmary I've been referred to - does anyone else go there? Are they nice?

Just really wondering what to expect and how I can make the most of the referral, as I really need to get my asthma under control (doing a very demanding course at the moment and then have an even more demandinf job starting in London in 2015, so I really can't afford to keep taking time off and having my brain feel like swiss cheesefrom prednisolone/lack of sleep).

Thanks guys!

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  • Hello and welcome,

    I also have allergy/anaphylaxis with asthma and have only been hospitalised a few times in recent years with my asthma.

    I was referred to St James' at the start of last year (I was given the choice between there and LGI but my allergy cons is there so thought I would keep it simple). The first appointment was really just going through my history with asthma - medication, symptoms, triggers etc. They also repeated lung function tests (which I had previously had when under a cons about 10 years ago) and blood test to look at IgEs. The cons was keen to use this to confirm allergies which were suspected but never confirmed - cats and dogs too. They changed my preventer inhaler to Symbicort but that didn't work for me. At future appointments, it was confirmed that my asthma does have a big allergy component and my IgE was very high so they worked with my allergy cons to try a different combination of antihistamines and nasal sprays which seemed to help. She also suggested other inhalers on top of what I was already taking for example Intal which work on different receptors and she said she had anecdotal evidence to suggest they were beneficial to some allergic asthma (only in her personal experience with a few patients though). Unfortunately all the inhaler did was make me cough but I have since tried Spiriva which has helped me. There are also things like theophylline which could be an option. I also suffer from post nasal drip and being very full of mucus so had physio for this.

    In terms of being prepared, I would go in ready to talk a lot! Even though I know they had information from my GP, the cons basically said tell me from the start (for me spanning 30 years). Take peak flow diaries, symptom charts/inhaler use if you keep them and inhalers/other things that you have tried. Also think about what you want to achieve from the appointment. The one thing I wished I had done was taken some notes as I walked out and thought oh I didn't mention that. I have found that talking in terms of quality of life and persistent symptoms helps them to understand rather than the severity of attacks. The other thing you could do would be to ring the advice line - I had previously been told that I was not suitable for Xolair (IgE too high and not having severe enough attacks) but the nurse there said that this has changed and I might be suitable (I think there is some info on this website about it).

  • I have just looked at the info on here in knowledge bank and it is linked to hospital admissions which I have had in the past two years. Still don't know whether I am suitable for it though with my IgE levels. Sorry

  • Hi Kitty - what a bummer :( The good news is that your situation sounds very similar to how mine was, and these days my asthma is well controlled again.

    My specialists did FEV1 / FVC - which it sounds like you've had before. They also did a load of tests for specific allergens and aspergillus allergy, and general IgE levels.

    I was also on Seretide and Montelukast, and they added in Spiriva, and initially Domperidone as well as I was having a lot of coughing after eating. I have epi-pens and take antihistamines daily. The Spiriva really helped me - it's currently only licensed for COPD but I believe a lot of people with asthma at the rubbish end of the scale are on it now. For a while I was also on carbocistine, which is a mucus thinner that makes it easier to clear the mucus from your chest - that helped but unfortunately I became allergic to the colouring in the capsules.

    Other than that, the specialist took a lot of history. He did a chest CT to check for bronchiectasis (remodelling of the airways due to multiple chest infections) and other nasties - but they might not do that with you, I'd been admitted several times by then and I'm 37 so had had longer to amass damage. They did a nitrous oxide breathing test which can be an indicator of inflammation.

    For me, the key was getting diagnosed with Adrenal Insufficiency / Addison's. Once that was being treated (just a replacement dose of steroids - equivalent to a few mg of pred but of a nicer steroid) I became less and less reactive to all those triggers like cold air. That started a virtuous cycle, or at least broke the existing vicious circle of cough-inflammation-sensitivity-trigger-cough that had been going on before. My IgE levels came right down - so even though they had been talking about Xolair I haven't needed it.

    I went from not being able to get up the stairs to running 50km / week in just a few months. And my spiro went from 'ok' to what my consultant calls 'supra-normal' - I've always had a good peak flow for my size because I used to play a brass instrument.

    I hope they manage to find the right drugs / treatments for you quickly,

    Cx

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