Feel so out of control

I've had adult onset asthma for many years and it was always relatively well controlled on seretide 250 and montelukast (just the odd chest infection through the years needing steroids and antibiotics). I never considered it a huge issue but I've had a massive drop in control in the last few months.

Since Summer I've had 5 hospital admissions which has included being blue lighted to resus twice and I just can't seem to get back any sort of asthma control. My peak flow is stuck in the 'amber' zone of my action plan despite being on a tonne of drugs now and I'm just so fed up. I'm struggling to get back to work (I teach primary) and even to get around my own home. My chest is constantly tight and aching (I think due to how long I've been fighting to breathe) and I just feel so rubbish and fed up and like it's never going to get any better :( My consultant says my asthma is severe brittle asthma which isn't a term he uses lightly because it is so out of control.

Currently taking:

600mg uniphyllin twice daily

Revlar 182

Spiriva respimat

Montelukast

Cetirizine (allergic asthma)

50mg pred

Lanzoprazole (for steroid side effects)

Calcium and vitamin d (for steroid side effects)

I've been on 50mg pred now for 4 months, every time I try to start a taper I end up back in hospital. My uniphyllin was just put up to 600mg from 400mg Friday by my consultant and all weekend I've been shaking so badly I can't fasten my daughters buttons up, headache from hell, nauseous and light headed. I've only taken 400 this morning because I can't stand the side effects any longer at the 600mg level. It's like the worst hangover I've had but it won't go away :(

I know my consultant is doing everything he can, he's sent an urgent referral to the severe asthma clinic in Leeds (my nearest) and I'm waiting on Xolair injections but I just feel so fed up and like I'm losing my normal life. I can see my partner is fed up with me constantly being so poorly and rubbish, my kids are struggling with Mummy being poorly and it's even worse when I'm in hospital as they're still very little. My work are trying to be supportive but my job will soon be on the line if I can't get back to work. I don't even trust myself to drive I'm that shaky currently. I'm just so fed up and down I could honestly cry (except that would probably set my asthma off). I guess I just wanted to vent and see if anyone else has been here and can offer light at the end of the tunnel :(

3 Replies

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  • Sorry to hear that you are struggling so badly.

    I have had "asthma" for almost the last two years but I cannot control it with an inhaler - only an eight day course of pred seems to do anything and I cannot take that forever. I am waiting for a CT scan on my lungs as I am now worrying that I have something more sinister.

    We can only plod on......

  • Hi Arianasarah866

    Keep pushing for the Xolair treatment, it sounds like you meet the 'NICE' criteria for the treatment.

    I have been on it for 3 1/2 years now and it has got my life back near normality again.

    Once I started it I stopped taking the Uniphyllin, Citerizine, 4x daily nebulisers. I had been having 5-6 hospital stays per year + many A&E visits, I managed to stay out of hospital a few times as I self monitor with my peak flow, Oxygen Sats, blood pressure, home nebs etc,

  • One of the things that is known is that asthma control drugs that worked once may suddenly lose their effectiveness. It is possible that this is happening here. I am only know this from listening to a university lecture by an asthma consultant.

    It is worth while seeing an experienced Alexander Teacher. What has an Alexander teacher who never prescribes medication to do with asthma you may ask. When FM Alexander first started his practice in London at the beginning of the last century he was known as the breathing doctor by many doctors who happened to recommend patients to him.

    Many asthma sufferers have tight ribs and raised shoulders which prevent easy and efficient breathing. Also there is a tendency to contact structures when breathing in rather than let the air pressure help with breathing in. The Alexander technique is helpful in that it helps re-educate posture and muscle behaviour so that breathing can become easier. So it may be helpful to give Alexander technique lessons a try to see if it helps.

    Hope I have been able to be helpful.

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