Still struggling

[Emmajayne75]

I'm a brittle asthmatic, was only told the brittle part about 3 weeks ago, had my asthma pretty much under control this year only a couple of flair ups until about 3-4 weeks ago when I caught a chest infection since then it's been constant symptoms, i was rushed to hospital last week from the gp surgery and have been on 40mg steroids etc since but I really don't feel I'm getting any better, I'm still sob even with using my neb, anyone got any advice because to be honest I've run out of ideas of what else to try, thanks for reading

[servewithmintsauce]

No kidding, I had to check I hadn't written this post! The timescales and everything…

Might I ask a few questions of you? Such as what medications you're on (besides the pred), and when you were diagnosed initially, hospitalisations etc.?

Thanks, Matt

[Emmajayne75 in reply to servewithmintsauce]

I was about 15 when I was told I had asthma, I didn't have to much problems with it until I got into my thirties, about 4 years ago I went down hill hard and fast and for a couple of years i just muddled on, finally got to where for the majority of time I was controlled then bang! I'm currently on symbicort 200/6 2 puffs twice a day montluckst sorry cant spell omiprzole 20mg 2 a day 3/4 nebs a day and salamol inbetween plus the lovely pred, thinking that's it but steroids r slowly rotting my brain lol

[servewithmintsauce in reply to Emmajayne75]

I'm currently on Seretide Evohaler 250/25, 2 puffs twice a day; Montelukast 10mg, 1 tablet at night; Atrovent 20mcg, 2 puffs 3 times a day, and Ventolin 100mcg, 4 puffs 4 times a day. I'm also currently on my 3rd week of 40mg Prednisolone, and I might be staying on pred long-term if we can't taper it completely off.

There are various meds options from where you are right now, which I can help you look into before you next see your doctor, if you'd like. Some of these are:

- increasing your Symbicort (200/6, 2 puffs twice a day is technically a 'medium' dose rather than a 'high' dose);

- trying a different combination inhaler (such as Fostair, Seretide, or Flutiform);

- adding on an anticholinergic (such as Atrovent or Spiriva);

- adding on a theophylline (Uniphyllin, Slo-Phyllin), or

- regular low-dose pred (not ideal, I know, but needs must and all that).

My future is currently looking like a shift towards regular prednisolone at a low dose, although I will push for a theophylline before pred because pred makes me teary and stroppy (on top of being a teenager haha), and I also get 'pred hunger' really bad. I might be moving from regular Atrovent to once-a-day Spiriva, with Atrovent as a reliever-only, for convenience's sake.

Please feel free to chat on here or PM me it's good to be able to talk to another brittle asthmatic who's quite new to it! Like I say as well if you'd like I can help you look into the things I mentioned above

-- Matt

[Emmajayne75 in reply to servewithmintsauce]

Yeah I have tried a few those in the past but there r some I've not heard of and will definitely look into, totally agree that it's nice to talk to someone who gets it I also get pred hunger which isn't good, just spent the last 18 months losing9 stone and have no intention of gaining it back, off to try and get a little sleep now but maybe back in the small hours lol

[hb1977]

I was diagnosed 19 years ago aged 19. All fairly easy to manage with only a few exacerbations and the odd rare visit to ED for nebs. Until 2014 when it all seemed to go very wrong with lots of ED, loads of Prednisolone and antibiotics. Have had consultant care since last August and 2 admissions this year, currently have an exacerbation being managed at home with Pred and antibiotics. I'm on Seretide 250 (2 puffs twice day) Montelukast at night. I use Salbutamol & Atrovent as required and have extra Flixotide 250 for exacerbation. My consultant has decided this year it's brittle asthma although we've not talked about it loads. I do have some concerns about this label and what it might mean for me and also that I'm on quite a lot of treatment but I still cannot cope with infections (especially viral infections/colds)

[servewithmintsauce in reply to hb1977]

How does the extra Flix work out for you? I'm currently just trying to breathe through the days but once I'm better we will be discussing my action plan, and having a separate Flix to add in at the yellow zone is an item on the agenda. I haven't met anyone else who has the Seretide + Flixotide bundle.

[hb1977]

Hi, I always try it for zones which are 80-60% of best; of the 4 exacerbations this year 3 of them have needed Prednisolone and 2 of the 3 exacerbations involved ED and hospital admission. So, I'm not convinced of it's success and I think lots of doctors would advise straight to oral Pred as inhaled steroid dose already good.

However, I'm always ready to give it a go just in case and I tend to stay on this increased dose for 2 weeks by which time I should be fully recovered!

The brittle diagnosis is still new and before this year I'd never even been admitted for asthma; just the odd ED visit for nebs.

I did also think that starting oral steroids at 60% of best (as is my plan) might be a little too late for me and not prevent admission but on this current exacerbation it seems to have worked and I've stayed home.

I guess this illustrates the variable nature of asthma and how exacerbations can vary!

[Emmajayne75]

Well I've given up on the sleep thing, managed about 3 hours in bed so not to bad, my problem is I can't rely on pf I can be really bad and still be getting 340 pb is 460, even consultant is amazed at how good it can be even when there is very little airflow, so I have to go by symptoms more so but I admit I'm not always great at admitting they r there until I've got the 10 ton pressure on my chest and I feel that someone is squeezing the base of my throat, is that just a symptom for me? U don't hear much about that one?