Hi this is my first post really struggling with my asthma I've been in hospital 27 time this year all a week long I'm on montelukast, unphylin, cetrizine, salbutamol and symbicort inhaler also home nebulisers when on steroid my symptoms are reduced but not goon I wish I could be able to spend more time at home as have a 5 yr old son all I need is a maintaince dose of steroid to keep me out of hospitals but medical professionals won't give it to me becuz of side effects what can I do ?

5 Replies

  • The side effects for long term steroid use are pretty grim so I can understand the reluctance. I can't give you much advice but when the helpline reopens on Jan 4th maybe you can get some advice from them? They were a great help to me when I had a bad flare-up last Jan and gave me the confidence and support I needed to confront my GP and tell him my current situation wasn't acceptable and I needed a course of steroids. It could be that a change of med combo may make a difference so that long term steroids aren't required?

  • Am I right that you have allergic asthma ?

    I've heard good things about an injection called xolair. Never had it myself but heard that it really works for allergy induced asthma. Have a read about it on the Internet. Good luck. It must be terrible not being with your son. Hope the new year brings you all that you wish for.

  • Google : Give Asthma the Big A . I've had remarkable help with this but it is not good for pregnant women.

  • It's shocking that you're so unwell! Firstly, have you been referred to a respiratory specialist? If not, insist on that happening ASAP. If you haven't had a full set of allergy tests that should be done to identify your key triggers. You also need X-Ray, lung function tests and spirometry, possibly even a contrast CT depending on what they find. Demand all of this if you haven't already had it, but the specialist should do it all as a matter of course.

    Someone else mentioned Xolair. If yours is allergic asthma, and you identify your allergens and do your best to avoid them and are still uncontrolled, then you may be a candidate. You'll need an IgE level test which is done with a blood sample to see if you're eligible. I've been on Xolair three years now and, while it's not erased my asthma completely, it's reduced my symptoms by about half and I can now mostly live my life.

    But, first step: referral. Insist on it and fight for it. Good luck.

  • Like others have said get a referral to a specialist. If you are under a local hospital ask to be reffered to a national centre.

    I'm on long term steroids. I wish I never went on them! The side effects are horrible.

    Good luck.

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