Adult onset, poorly managed severe asthma.

Hello All!

Im hoping to learn more from everyone, it seems a super forum & I dont know anyone else personally who has asmtha.

I was diagnosed three years ago after a long term chest infection which resulted in being hospitalised for presumed pnuemonia. I was an active horse owner & rider for over 30 years, various dogs, self employed & a relativly fit, active single mum (although a smoker in moderation) In the past 3yrs my life has changed to the point where during an asthma ""cycle"" I cant walk more than 50 yards & was told I have higher allergic markers now to my horses, dogs among other things (which I cant change such as house dust, dust mites, tree pollen)

What does an asthma attack look like?...sounds a rediculous question right, but by the time the hospital sees me Ive usually been struggling for weeks, seen my GP & already had courses of steroids / antibiotics etc.

I dont feel I have ""asthma attacks"" - they dont come on suddenly & then ease off - but build over a period of 6-8 weeks, usually due to a chest infection coming on, the wheeze, then cough, then rattled breathing which gets progressively worse & lasts for upto three weeks at which point I normally end up with the ambulance & then hospitalised for a week - the last time was only three weeks after the previous week of hospitalisation & I was in HDMU for 48hrs (although wasnt tubed).

My heart rate was 155 & resp 117, sats 84% & that was after six continual hours of 100% oxygen & 40mgs preds. For the first time I felt as though I was loosing the battle to control my breathing - normally I dont panic, but these episodes are getting closer together & taking longer to respond to steriods & treatment etc.

Ive had all manner of tests, CT scans, X-rays, bloods, globin levels checked etc & have moderately raised allergen levels to elements I cant eliminate. After three years on & off steriod courses I now seem to catch every cold which manifests as infection in my chest. Ive tried various drug courses (Phyllocontin, the handy haler, brown inhlaers etc) & now am Ceretide 250 morning & night, ventolin (when Im poorly I use one in a few days which actually irritates my airways) montelukast & finally purchased my own home nebuliser (which my GP then presribed Ventolin & Ipratropium for) & the hospital have supplied Combivent & another steriod course whilst I get through this spat.

Im desperate to get onto the Bronchiol Thermoplasty trial in Glasgow - there are only five places up here Im told. There are some super links about this procedure & it seems to have been used to great effect in USA & Canada for over ten years. There have also been studies (four years) done in UK - Birmingham I think, with patients followed over a 12mth period & again results are very positive after initial healing - Ive tried to be as proactive about researching the procedure in addition to the pre-requisites (stopped smoking etc) - but patiens are only allowed to have had three courses of antibiotics on the preceeding 12mths, I am currently on my seventh so I know I will probable either need to wait another year or be deemed unsuitable.

In the interim however, one of my consultants has suggested I try Xoliar & my concern was - does anyone know if would this negativly impact on my suitability for thermoplasty?

Does anyone have any ideas of additional, perhaps not widely known things I can try too? I cut down on dairy, the dog gets dysoned (my consultant actually doesnt feel the horses, stables, hay, etc or the dog are the issue) & have booked the salt caves in Edinburgh to try (again its something now getting good press from GPS & NHS approval).

Many thanks for reading my long ""intro"" - & look forward to catching up with some of you,

scotia

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Hi Scotia,dont know anything about the bronchial thermoplasty,but I had a similar experiance to you,where my well controlled asthma suddenly became serious and out of control,and I was on that rollercoaster of infections,more and more steroids,that didnt work,its exhausting ,i started xoilair this summer and things have improved so much,I didnt think allergys were the cause,and my ige wasnt very high-140-but its been a dramatic improvement,my last flare up lasted only 2 weeks and responded well to 40mg,where before i was on 60mg and it was taking weeks to get a small level of stability back, and then it was off again,its great to be getting back to a normal life.i never had what i felt was a life threatening attack,just constant shortness of breath and extreme tightness,exhaustion,i couldnt get up the stairs,go shopping,or run the house,i felt so ill ,and having had asthma since childhood,this didnt compare in any way,so also had every test and nothing else showed up,really hope you get sorted soon, is that seretide 250? just wondering why you're not on 500,x

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I would try the xolair if it works then u may not need the bronchthermoplasty ... The bronchthermoplasty is invasive and long term side effects and benefits are still not known and the xolair seems a safer option.... If it doesn't work then the bronchthermoplasty is still an option.. It seems by ur profile that there is still a few options available for your treatment .. Wish your luck for what ever treatment t u decide to get ...

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I would try the xolair if it works then u may not need the bronchthermoplasty ... The bronchthermoplasty is invasive and long term side effects and benefits are still not known and the xolair seems a safer option.... If it doesn't work then the bronchthermoplasty is still an option.. It seems by ur profile that there is still a few options available for your treatment .. Wish your luck for what ever treatment t u decide to get ...

[Skee-skee]

Welcome to the forum.

Don't worry the question what is an 'attack' has come up before. I don't have a good answer off the top of my head, have you searched the forums?

If you are usually struggling for a few weeks before an admission is it possible for you to get an urgent hospital appointment? or maybe speak to a respiratory nurse at the hospital?

Have you been investigated to check you don't have other conditions which are making the asthma worse? Things like reflux can make your asthma worse and more prone to bacterial chest infections.

Well done on giving up smoking- how long ago did you stop? It might affect your eligibility for things like Xolair and clinical trials.

Have you seen a good allergy specialist to help with the allergy side of things? You could also consider asking for a referral to a tertiary referral centre like the Brompton or Heartlands who are excellent for 'difficult asthma'. I think Gussypoo is right there are other things to try.

Take care

Bryony

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Many thanks for your replies folks - will keep you posted

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A bit like others here I had asthma as a child which then went and came back with a vengeance once I reached adolescence!

I am a bit like you in that I usually get an infection which sends me into a downward spiral (although past two years once I'm recovered slightly I get another infection and another spiral). So iv not really ever had an attack, apart from twice recently. Also have horses and just suddenly deteriorated quickly in about 5 minutes and knew I need to get out of there. Oddly I was kind of delighted because I had felt like a bit of a fraud up until then with not having ""attacks""!

I also tried Xolair for about 9 months. My Ige wasnt to high (like lona about 140) but there were problems getting a reading off steroids so not too sure how accurate the whole thing was. It started off well but I'm now off it as everyone felt it wasnt making enough of a difference.

Trying a few other treatment options at the moment, was like you desperate to get on a bronchial thermoplasty trial but consultant/prof said a definite no. Ho hum.

Hope your feeling better soon. I'd look into trying the Xolair. AT least if you didn't get a place this year you could prove all other treatment options had been explored and you never know Xolair might just be the thing to fix it all (positive thinking and all that)!!