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I finally have an appointment...(7 Posts)
with the severe asthma team at Addenbrookes. My asthma hasn't been responding to treatment for close to 2 years now, after a huge asthma attack and a weeks stay on the respiratory ward. The follow up appointments never came through, and by the time they did we had moved to a different county. I've been referred to the severe asthma clinic and after months of waiting, finally have an appointment for next week. But I don't really know what to expect. I have had 7 courses of oral steroids this year, and 5 courses of antibiotics for chest infections. I feel so unwell all the time, and have random allergic reactions frequently too. Not severe, just hives every so often, facial flushing and a rash on my chest, coupled with wheeziness, but although the skin prick tests all looked positive for 14 out of 15 things they tested, the allergy consultant decided I'd reacted to the actual skin prick and not the allergen.
I want to go armed with my list of symptoms, things I think are triggers and what I'd like to happen, but I actually don't know what I want to happen. If they can't pinpoint what it is that's causing all my symptoms, then how can they ever know how to treat it?
I'm currently on fostair twice daily, with qvar on top (which hasn't made a blind bit of difference), montelukast at night and Fexofenadine daily to keep allergy symptoms at bay. But I'm still wheezy most days, short of breath a lot and just so, so tired all the time. I just want to feel well again. 2 and a half years ago, I was nearly 4 stone lighter ( most of that is steroid weight gain, although because I can't exercise that's contributing too), my skin was healthy and glowing and I had so much energy. I worked full time and went to the gym 5 days a week. Now I can't even manage part time working and I get out of breath walking up the stairs.
Anyone with experience of severe asthma? What are you taking, and how well is it working for you? Did it take a long time to find a treatment that worked for you, or did you get things resolved quickly? Addenbrookes is over an hours drive, with no way to travel by public transport, so DH has to take a day's holiday every time I have an appt. There's no severe asthma service nearer, and I don't know how we'll manage if I have to go back frequently.
Gosh. No real words of wisdom OP, but that sounds really tough.
As well as the skin prick test, have you had a RAST test done? That's a blood test that picks up elevated somethings (I forget details now). My DS has had RAST plus skinprick tests. We found the pricks more helpful, as only a couple of things stood out. However, a RAST test might help you to determine whether the skinprick test seems to reflect the fact you have allergies to lots of things? (Or not, hopefully)
Also, have you considered consulting a naturopath? They tend to take a holistic look at a person's health, diet, etc. If you're not getting anywhere with conventional medicine, it might be worth a go to try to uncover more subtle things going on (e.g food intolerances etc)
I had RAST done when I was in hospital after the asthma attack, but all that showed up was a possible dust mite allergy. However, all the other random reactions started happening long after that, so I suppose it's worth asking to be tested again. The allergist said that because my symptoms weren't seasonal, the skin prick test wasn't reliable as I tested positive for things like pollen and mould. Apparently the wheal and flare that appeared were because my skin reacted to the actual lance piercing my skin, as I reacted to the control substance too (water). I didn't react to kiwi though, which they tested for. Not even a slight wheal where they pricked, so that didn't make much sense to me.
It was only when I went away and thought about it, I realised that if I am in fact allergic to 14 different things (dust mites, pollen, mould, milk, wheat, lupin, soya and a load more) then I wouldn't have seasonal symptoms as, apart from pollen and mould, I'm exposed to those things on a daily basis.
I just feel so dismissed and so frustrated. We take breathing for granted, it's such a natural thing, but when you struggle with it on a near daily basis, it's so mentally and physically draining.
Also, I don't know how reliable the RAST would have been as I'd had 5 days of steroids by the time they drew blood for it. It was supposed to be noted, but I've seen a printout of the results and it said nothing about them maybe being skewed.
Any other severe, poorly controlled asthma sufferers out there?
@Mitebiteatnite - I don’t have severe asthma BUT I know what it’s like to want to make the most of a previous doctors’ appointment you’ve been waiting and waiting for, so I tried to do some research for you.
1. It sounds like repeating your RAST might not be a bad idea. Talk to them about how your last one might have been affected, your differing symptoms since then, taking a RAST that won’t be affected by you taking steroids, etc.
2. You’re on a lot of a treatments currently, but maybe they’re just not the right ones? This is the best article I could find that gives a complete overview of the treatments for severe asthma. Maybe it’s time to consider a biologic, though they can be hard in your body (in my opinion, nothing is harder on it than prednisone in the long run, though). Look through it and maybe make notes of which categories of drugs you haven’t tried (maybe anticholinergics? Not sure). www.healthline.com/health/get-serious-about-severe-asthma/new-treatment-severe-asthma#3
3. Ask them how to move forward tracking your symptoms. You need to have a definable way to track worse/better (like peak flow, spirometry, etc) so that when you do see them, you can confidently say things like, “Every day for two weeks, my breathing was 20% worse in the mornings.” It will be immensely helpful. So make sure you have ways to measure, and that you’re diarying them, and have them tell you what measurements they want.
I’m so sorry you’re going through all this, and best of luck at your appointment
That information was all really helpful, thank you. I saw the registrar yesterday (apparently appts with the consultants are like hens teeth) and to begin with she was confused why I was there! I then explained that I'd had 7 courses of steroids since January and she started to take me more seriously. I had more bloods done, IgE for pollens and other inhaled allergens, and also a other set of skin prick tests. Spirometry and FeNO tests too which she had the results of, but said she would write to me and report them. She increased my dose of steroid inhaler, so I'm now on the absolute maximum which makes me a little nervous because when I find my symptoms worsening the first thing I do is increase the steroid inhaler, which I now can't do!
She also noted from my last bloods that my hib and pneumococcal immunity was very low, and asked if I'd had had all my childhood imms, which I haven't because my mum was antivax! She seems to think it could be the reason I have such frequent chest infections. I'm going to have them done at the surgery next week, so hopefully that should kick in soon and I'll have a winter free of infections!
My skin prick tests showed a lot of reactions again, and they still haven't decided whether I should be avoiding anything in particular yet. But if I do, it's basically everything! Eggs, milk, wheat, soya and lupin. Cats, dogs, pollens, moulds and dust mites all tested positive again so looks like I just need to reduce my exposure to them as far as possible, but it's incredibly difficult when you live as rurally as I do!
I still don't feel any better informed tbh, I'm seeing my GP next week so hopefully I'll have the letter from the registrar by then and we can work out a plan from there.
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