Have been an asthma sufferer since childhood, diagnosed with COPD 18 years ago have been told I should only use steroids three times a year

what am I supposed to do when I need them other times, told this by respiratory nurse who I have only seen once in 18 years I always have an emergency pack should I just sit and look at it after my three times? the mind boggles

6 Replies

oldestnewest
  • Oh dear dunmow. One visit in 18 years?!

    Not good enough. I see my respiratory nurse twice a year at a busy London practice.

    I don't take steroids except for what's in my inhalers. They make feels very ill, don't know what will happen if or when I deteriorate :(

    I think perhaps a call to the BLF nurses for advice on what to get from your medics. Do call, 03000 030 555. Cost of a local call from a landline and office hours.

    All the best to you. P

  • Its because of what they do to your bones.. I have had a bone density scan and have been diagnosed with ostioporosis.. I have to take calcium with vit D and alendronic acid once a week .. I am on steriods again at the moment until they find out what exactly is wrong with me I cant do without them when I have a flare up .Maybe ask your nurse about it .Jan xx

  • thanks for advice, hope they sort you out soon, I have been on steroids since 1962 for asthma nobody has ever suggested calcium, will ask nurse when she calls this week. Moya

  • I would get second opinion from doc or chest consultant .... sometimes steroids are better of 2 evils sadly. X

  • My consultant has taken me off steroids after years of constant use, he says they lower your immunity to all the other bugs that are around. So now it's antibiotics only.

  • Hi I know how you feel I've had asthma since age 4 and now 37 I have moderate level you should always see your respiratory nurse 2 times a year for lung function updates