Asthma out of control & causing more problems ?

I've had asthma since my 6th birthday & now I'm 15. But it's been out of control for over 6 months now. I'm on a number of medications which include

- seritide 250 2 puffs twice a day

- theophylline 375mg morning & night

- steroids 5mg but have been on 40mg

- singular 10mg

Also I have ventilon and atravent nebuliser solution when inhalers aren't cooperating.

However I've just been in hospital for 14 days to see if they could get my asthma under control and basically they've told me that they can't do anything, which has made me feel shit about life and wanting to give up. The only thing they've actually found out is that I have a cataract in each eye and I'm on the borderline of developing diabetes due to the amount of steroids/ medication I am on and I have been on.

I also get tired and horrible lung pain due to side affects?.

I was just hoping to find someone similar to this and talk to them because my friends/ family don't understand because they don't have to go through It.

Thanks in advance

Bryony x

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Hello and welcome!

First of all, I'll say you may well find it useful to have a good read around the info on the main Asthma UK site, along the purple bar at the top of all pages and there's drop down menus when you hover over. There's also a number for the asthma nurse helpline.

Onto to your main point about the hospital saying there's nothing more they can do. Is this your local hospital or a more specialist asthma unit, you may hear these called severe/difficult/brittle? What this generally means is nothing more *they* can do, however doesn't mean no-one can. If you haven't had more investigations, it could be looking at allergies, infections or other possible causes of chest flare ups.

Plenty of people on this forum have been in similar situations. Hopefully, more will be along shortly but have been going through a quieter patch.

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Hi Bryony,

I have been in that situation, where I've basically been told 'this is how it is' and its horrible. BUT like TJ said above, that may not be true. If it is your local hospital telling you this, I would urge you to request a referral to a specialist lung hospital, or specialist difficult asthma service - of which there are a few (not sure where in the country you are). I go to Papworth Hospital, which is the UK's largest dedicated heart and lung hospital, and they have completely turned my lungs around, from it essentially looking like I was going to die, to being relatively stable the majority of the time.

There is the severe and brittle asthma unit at Heartlands in Birmingham, and at Glenfield Hospital in Leicester. Papworth hospital is near Cambridge (but people go there from all over the UK), and the Royal Brompton (London) also has a specialist difficult asthma service. They are the ones I know of. Your GP can refer you. My asthma care by the local respiratory consultant at the hospital was terrible, and so my GP referred me to Papworth. They basically started from scratch, with loads of investigations etc, before establishing a management plan. The reality is I probably wouldn't be here now, if I hadn't been referred there. Don't give up hope, get that referral!

Lynda

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Hello and thank you for your replies! I have been refereed across to an asthma specialist and that's where I stayed the last 2 weeks. I'm highly allergic to something but no one can seem to find out what. I was on xolair for 5 years but now they've took me off it due to it not being effective anymore, they're waiting for another research project/drug but it won't be available till November.

So for now I've been told to carry on, even though my nitro oxide (cloud machine) is no 194...& basically stay on all this medication until November.

And yes I've been classed as having chronic asthma ?

Thank you for the support

Bryony x

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Hi Bryony,

I am so sorry you are having a rubbish time. I've got a 16 year old daughter who has had a crap time too for a while I and know she feels the same as you. I am trying to get her to access the forums as you are right we don't understand fully what you are going through but it is heartbreaking for us watching our children suffer and we feel so damned useless most of the time not being able to help you and make you better.

I hope you are now getting the right care for you and things are improving for you.

Take care

Loulou

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Hello, still having a rubbish time, going back into hospital today for another month so they can take a 2nd attempt of trying to get me stable with the lowest level of medication.

There used to be a childrens form kickasthma but I can't seem to find it anymore?

Hope your daughter feels better soon and doesn't have to go through a rubbish phase for long

Thank you

Bryony

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Hey Bryony,

first and foremost I wanted to say that I know exactly what you are going through as I've had almost identical situations. I have struggled with asthma since infancy, I am now 27, and now I'm finding it harder to stay optimistic .

I was wondering if the UK has a drug called Advair and if you've tried that yet? I take it and have off and on for about 10 years now and it has helped when nothing else has. It is a type of inhaler taken twice a day and I have found that my asthma was at its absolute best (which believe me is still awful but tolerable) when I took a combination of advair and singulair.

As I said before I have battled this demon for my entire life and have gone through almost every test, medication, emotion possible so if you have any questions please don't hesitate to ask.

Best Wishes,

Mary!

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Advair is branded as Seretide in the UK.

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Yes I am on both of them, 1000mg a day of seretide & 10mg of singular