Officially 'severe'

Ive not been about through Lent, but during that time I saw my new consultant who has officially diagnosed me as severely asthmatic. Its strange, Ive been asthmatic since childhood but this feels likea new diagnosis and is taking time to get my head around. I am now on a suitcase of meds:

Symbicort (6 puffs daily of 400/12)

Ciclesonide (2puffs twice daily - max, usual dose would be 1 puff a day!)



Lansoprasole (in case there is a heartburn componant)


Prednisolone - have been on this continuously since mid Dec and everytime its reduced below 25mg everything falls apart. Currently 3rd week of 60mg!!

Salbutamol nebs 3x a day

Alendronic acid and AdcalD3 to protect my bones from steroids.

The side effects are driving me nuts and I still can't breathe!!! Seeing consultant again this afternoon, but finding it all really hard work and wondered how some of you coped with a sudden deterioration and diagnosis of severe asthma?


5 Replies

  • Ugh - i know how you feel!!! My asthma has gone massivly downhill recently and its so annoying having to come to terms with the changes! 60mg of pred!?! blimey - you must be tougher than me - i fall apart anything above 40mg, i'm dreading friday - tommoz is my last day of pred 40mg and im dropping straight to 20mg of hydrocortisone (equiv to about 5mg of pred) for a few days s i can have my adrenal glands tested - really want to get that side of things sorted, but can imagine my lungs not lasting 4 days without pred - and obvs any attack is going to be a bit more nasty without pred already in my system propping things up!!!

    you sound like you're on fairly similar meds to me (except im not allowed home nebs - i always forget how much better i feel on regular nebs - i go into hosp and feel AMAZING for the first few days when im on them regularily - sigh!) but ive just stopped uniphylinne as it was making me tachy and not doing much else in my opinion - do you find that it helps?

    I think severe asthma and 'blue inhaler' asthma should have different names - obvs both are very real conditions and stuff, but the effects are so very different that they really dont feel anything like the same condition!

    I assume your cons is trying to deal with side effects. Mine basically said that we could go and stop things i didnt think were helping (like uniphylinne) and then increase on other stuff. Its nice to have a kind of systematic way to work through things, and it means that i feel a bit less miserable - i dont like stopping things when im still so poorly controlled, but if its not helping then its not worth the side effects in my books!

    I think this site is good for rants and stuff, but dont forget that difficult asthma is stressful, and stress can make asthma control worse - talk to your cons about it but do you feel like you'd benefit from having someone to talk to about all this stuff? I think a lot of chest clinics have a psychologist/psychiatrist/councellor attactched to them to help people deal with the difficulties of not being able to breathe! it was even suggested to me that i was put on anti-depressants for a while, to try to limit any anxiety effects frommy poor asthma control - not for me but an option worth considering!

    How did it go today with your cons? :-) hope you have a plan!

  • Honestly? My first response was was ignoring it and hoping it would all go away..... That didn't work out so well! Lol :-)

    Its taken me nearly a year to get my head around my brittle asthma diagnosis and I still resent it tbh but I am learning to live with it, listen to my body when its telling me to rest and asking for help when I need it (which I found very difficult to do).

    Also don't expect miraculous improvements from any one med and prepare for it to take time to get a bit more settled lungs wise.

    Also, ranting on here when needed helps loads!!!

    Take care and be kind to yourself xxx

  • Well after my appointment yesterday I feel a bit happier I think. To begin, I had a well timed asthma attack - there are far worse places to have one than the respiratory clinic waiting room!! Meant the dr saw me badish, and asked me if I wanted to be admitted there and then (I didn't!). Over the next couple of weeks I will be reducing the pred to 35mg then sticking there until I am completely asymptomatic, and at the same time increase the theophylline - I was started on a baby dose of 60mg twice a day as I have a history of severe migraine, the plan is to get me to around 500mg twice a day so a way to go yet. I also have to go for a bone scan due to the amount of steroids I have had recently and in the past few years. She says, for now, we all just accept I am steroid dependant, whether that ends up being for 3mths or a year or 5years, or whatever, and we won't try to reduce it too fast or too low - though the aim is to get to a maintenance dose no higher than 20mg if at all possible.

    I have the number for a couple of the asthma nurses and have been told to call them whenever I need for advice, help or even moral support, and my consultant said she is impressed and supportive of my determination to stay out of hospital (said she has more trouble with people insisting on being admitted who don't need to be!) but if it all gets to much Im just to ring and there is a bed waiting for me.

    I'd be lost without my home neb! Its literally a lifesaver and also a sanity saver as it helps me avoid A&E 2-3 times a week!

  • resp clinic is a VERY good place to have an attack! :-) if you could teach my lungs to do that i'd be very grateful!! lol!

    Sounds like your cons is pretty on the ball, seems to have a plan - and i always feel better when i have a plan. I assume you are going to get your theophylinne levels checked regularily - 500mg sounds quite high, i guess it must be summit to do with how your bloods looked on 60mg. I was subtheraputic on 200mg twice a day, cons wanted to try 400mg but i wanted to stop, and he was kind of happy either way. Might end up back on it, but at least i've had a go at being without! I know the side effects of high theo are pretty nasty, and i assume you'd get the toxic effects even if you increased slowly - anyway, just my rambling thoughts :-)

    Maintainance of 20mg sounds better than going up and down all the time, and if you respond well to theophylinne, maybe you wont need a high dose which would be lovely!

    I cannot believe she has trouble with people trying to get admitted - maybe its just cause i tend to spend more time with 'younger' ill people who spend half their life trying to keep away from hospitals - as far as im concerned after the initial 24hrs after an attack all her over-eager patients can have my bed! Im usually pretty much ready to try and survive at home again by that point! Good that she's said you can go in whenever you need to - think it helps to be reminded of that fact sometimes :-)

    I want a home neb for exactly that reason - i do have weeks where im in two or more times, its completely ridiculous. I can see the argument of 'if i need a neb i need to be seen' and i do often require magnesium (have been in and out getting mg then discharged three days ain a row and weird stuff like that at my local) but i think if i could do early intervention with a neb i'd not NEED more than that!!! GRRRR!!! like i say - i can see the argument on both sides, i just feel like it would make such a difference that i get too upset to try and discuss it! sigh!

    anyways - glad you are feeling a bit more positive! how are your lungs holding up - did you get over yesterdays attack ok? :-) x

  • Yes Im recovering okay from the other days attack thanks. Upped the theophylline to 180 today as had no ill effects on 120, and feel AWFUL on it today! My consultant told me to try to ride it out, that the worst effects tend to wear off within a week - I seriously hope its less than a week as I feel a complete wreck!

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