Newbie advice please

Hi all i've yet to have any official diagnosis but after becoming very ill at Christmas i've been referred to chest specialist but typically with the NHS the earliest appointment is in June. I'll share my experience and would appreciate any help or advice to stop me worrying and panicking!

About a year ago I started getting breathless and wheezy with palpitations. I put it down to my underactive thyroid only diagnosed 6 months previously. It seemed to get worse. GP first said hayfever but antihistamines didn't help. It carried on until just before Christmas the GP suggested possible asthma gave me a blue inhaler and PF to start monitoring and to go back after the holidays. Within two days got a cold, chest getting worse.

Long story short I ended up in hospital in ITU in an induced coma for 14 days. They suggested an acute asthma attack along with acute pneumonia and a superbug to top it off. All in I was in hospital for over 4 weeks and am still signed off for another few weeks. 6 days after I was discharged I went downhill suddenly again couldn't breath and wheezing with the normal 2 puffs of inhaler not touching it. I narrowly escaped being readmitted but on strick instructions to use 10puffs every 2hrs and steroids (30mg?) Straightaway. My usual GP followed this up a few days later and prescribed steroids for longer as well as a new brown inhaler 2 puffs morning and night.

I've now nearly finished weaning off the steroids with a lower dose every 5 days but to continue using brown inhaler indefinately on gp's recommendation.

I'm concerned as both the consultants in ICU and the out of hours gp as well as my own gp have mentioned something called brittle asthma due to how suddenly and severely it came on?

I'm petrified of it happening again which is stressing me out which obviously makes it worse! I've already noticed i'm getting a bit breathless again at times which i'm assuming is down to the reduced steroids. Is it normal to be breathless often? Is brittle asthma different to 'normal' asthma? Can you have both? Is there anything I should be doing that may help?

Sorry for the essay but just looking for some reassurance as I don't know anyone with asthma to chat with. Tia☺

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9 Replies

  • Brittl Asthma is as I understand it "uncontrolled asthma". So you are liable to get infections and attacks. You should keep taking your inhalers and ask the GP what he suggests you should do in The event of an asthma attack or exacerbation. Once you have the right inhalers and dosage for you then your asthma should be controlled. I had brittle asthma and have found that I needed to change inhalers a few times to get things just right, even though for a long time things were controlled on one particular medication the time came when I needed change again. So far in the last five decades this has happened 3 times. Keep an eye on your peak flow readings and do not hesitate to cal, the Doc for an emergency appointment if it should fall I was told a fall of 10 points suggests something may be going wrong and you need to get yourself to the Docs to get checked. Never be afraid to call your Doc. It is what they a re there for.

    All the best



  • Learning your symptoms, recognising what they mean and having the confidence to medicate yourself to prevent a serious attack is tricky, scary and lonely. New diagnoses are hard to get your head around. That said once you've found a treatment regime that works life can and does get better.

    I'm amazed that even though you've had an ITU stay you still have to wait several months before you see a chest physician!

    Acute asthma is very frightening especially if it's a new illness. Hang on in there, use your GP/Asthma nurse and try not to let panic win(easier said than done!) it takes a lot of effort to keep calm. Asthma has different triggers, brittle asthma as I understand it is the speed and severity of your reaction to those triggers. Modifying your meds to prevent/manage those triggers is key.

  • Thank you both, it's reassuring knowing i'm not alone.

    Unfortunately I was on holiday in cornwall at Christmas (200 miles away) when I ended in up ICU so their priority was to get me well enough to come home as it was costing my family a fortune stay down there with me!

    Will be seeing my gp again next week so will try to get more info like triggers etc as I haven't got the foggiest other than it seems to be worse when i'm generally run down.

    Thanks again

  • Dear maddy, don't panic. This is not a death sentence. People live with this stuff and live well. I know, that in the beginning it is scary, but that will pass as soon as you find out what you need to do to stay well. Look at it positively - what can I do? rather than help! What if ...? When you see a chest specialist, make sure that s/he takes the time to explain it all to you properly so you understand what is happening to you. Before you go, write down all your worries and ideas and take this list with you, so when you are there, you don't forget anything. Take someone with you who can concentrate on what s/he says as if you go into a panic, you can't really hear what you are being told. There may be a period of having your medication changed again and again to get you the best treatment; unfortunately trial and errror is still the only way to get things right sometimes.

    Remember that like a lot of illnesses, asthma is made worse by stress, so find a way to be calmer. You can, eventually, control your asthma so don't let it control you.

  • It is worth while seeing an Alexander Technique teacher. They cannot cure the problem, but they can help reduce the problem by giving you some tools to help with posture and muscle control techniques.

    Poor posture and bad muscular habits will make your health disability worse than it needs to be.

    It is also worth seeing a McTimony Chiropractor. They should be able to help reduce some of the muscle spasms that are making your chest more rigid than it should be.

    Hope I have been helpful.

  • I'd get in contact with the hospital either via PALS or your consultant's secretary. It is not appropriate to wait until June for a follow appointment after ITU around Christmas. This might be a simple admin error in arranging your follow up but you should be seen sooner! Phone the Asthma UK nurses, they are excellent!

  • I'm trying Buteyko breathing techniques (Close your Mouth by Patrick McKeown) Saw me through asthma scares due to flu recently. Had my hospital essentials packed but literally sat up in bed all night breathing using diaphragm muscles only as far as poss and pausing every fifth breathe out, aim for 3-5 seconds pause but built from one second. Calmed me down, began to feel it was helping, and gradually did. Useful supplement to usual medication and certainly calming. I'm trying to do it routinely now through asthma crisis.....only three weeks so far but anything that helps is welcome!

  • I have brittle asthma. It is the old expression for severe asthma. I have the blue inhaler, symbicort, Montelukast (a tablet I every night). I also take antihistamines every day, with a nasal spray when my hay fever is triggered (it is at the moment, I am allergic to daffodils and trees in spring). I also carry steroids for when I have a real problem. My blue inhaler is an easy-breathe, but I switch to the blue ventolin and spacer when bad. I would suggest that if you don't already have a pre-payment certificate for your drugs, get one. I hope that everything goes well for you.

  • Thank you all for your comments and suggestions. Lots of research to be done!

    Thankfully I don't have to pay for prescriptions due to having underactive thyroid or I would have to remortgage the house at this rate!x

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