Newbee to site not to asthma, need advice please

Im Caroline and am 30, i was diagnosed with asthma when i was 3 so have had it a long long time, although it seems to get bad then settle down again but im in a rut at the mo and need some ideas about treatment and some general ideas to take to Resp cons next week.

I got admitted to hospital nearly 8 weeks ago with severe double pneumonia, was on back to back nebs, 02, had hydrocortizone im, and had a massive asthma attack, so ended having iv magnesium, was knocking on icu's door all night and was v v poorly. My cons said if i hadnt been in hospital then i would have died at home!!!!!!!!

Since then i have been on 40mg Smarties for 6 of the 8 weeks, 8 puffs of symbicort 200/6 (4 in am, 4 at bed) a shed load of ventolin - can be up to 60 puffs of ventolin through my spacer a day, in very short of breath and my chest is battered and bruised and feels like its being crushed constantly. Im having about 2/3 asthma attacks a day and feel so rubbish and fed up and dunno what to do any more!! Im back on antibiotics atm, and have had to have 8 nebs in the last 8 weeks, which is so unlike me - the last time i had a neb was about 6 years ago!!!

My asthma is now being discribed as ""brittle"" so i dont know what the implications of this are??

my inhalers atm are:

symbicort 200/6 4puffs twice a day

ventolin through a spacer about 60/70 puffs a day!!!!

in the past ive tried:

Becotide,

Green inhaler

Purple inhaler

Orange inhaler

montilucast

none of those have seemed to work in the past.

Does anyone have any suggestions on what treatments that i could ask the Cons if its worth trying? i need to ask him about my steroids as i seem to be taking so many - and im piling on the weight!!!!!

Thanks in advance

Caroline

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ps. sorry for the long 1st post xx

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Hi Caroline and welcome.

Sorry to hear you've been having such a rubbish time with your asthma. I'm not brittle/severe so others will probably be able to advise better, but just a couple of thoughts (I've learned a lot from this forum!)

-Are you seeing a regular resp team or are you at a specialist difficult asthma centre? Was just thinking a specialist centre might be able to help if you aren't at one and your regular team is baffled. 'Difficult asthma' places also test for other things that might be making your asthma worse but which obviously wouldn't respond to asthma treatment.

-Have you ever tried Atrovent (ipratropium bromide)? I'm sure I've seen somewhere (other members may be able to enlighten me) that you can get 'used' to Ventolin and it stops being so effective - given the number of puffs you're taking every day I would think it's not unlikely that might have happened. This apparently doesn't happen with Atrovent, plus some people (like me) do find it more effective - Ventolin has never worked that well for me but Atrovent is much more effective.

-Do you find all these steroids work? I don't want to assume that just because I experience something everyone else does too (I know my asthma is weird if not severe), but steroids - inhaled and tablets - just don't seem to work for me, and there are others who for whatever reason don't respond to them. Obviously you'd need to ask your cons and I don't know what they might be able to do or if they can do a test, but was just a thought as you were worried about all the steroids - obviously you'd still need to be on them if they are doing something even if not controlling you properly.

Hope this sort of helps, but like I said others on here are much more expert and might be able to give you some more pointers and things to ask about.

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Hi very sorry to read of your very bad asthma, it sounds like your asthma is far from under control, Philomela has a very good point in seeing a specialist asthma clinic, your meds are clearly not working, your having to use far too much ventolin, the number of puffs your taking shows it not working, symbicort might work better with the 400/12 but their are a good variety of alternatives and combinations which only specialist centres are good at working this out for you, I would'nt waste time with local general practitioners.

Take care and hope things get sort very quickly

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Ive got Respirity Team at Bournemouth Hospital on Thursday (are these the right people to be seeing? ) My mum is telling me whatever happens she would like me to get a 2nd opinion at Southampton as they are the regional specialists. Saw another Drs at my mums and he wasnt happy with all my treatment but didnt want to change anything other than extending my streoids till i see Resp team. Need to see my crap GP on Tuesday as have been away 2 weeks and loads has happened since i last saw my usual dr. The Dr here says he thinks im having ""silent asthma attacks"" where im having an attack but not actually wheezing, but my chest is not silent!! which is then making me anxious which in turn is making me hyperventolate.

Its getting me down and making me more depressed as i cant do or plan anything - in the last 7 days ive seen 6 drs!! All of them telling me my GP is crap and is not managing my asthma at all well and telling me to change drs.

Just gonna throw ideas at the consultant on Thursday and see what he says. Are Sub cut Steroids any good?? Is it better than taking smarties everyday? xxxx

xxxxxx

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have you tried any tablets such as unipylin - a theopyline based drug or motelucast or accolate - what about anti histamines or anti reflux meds - there is alot more to explore if you have not tried these.

Speak frankly to consultant and tell them honestly how you feel. Have been where you are and am just beginning after a long struggle to get things back on track...although have had lots of stbacks this year.