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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

dunmow1 profile image
6 Replies

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

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dunmow1
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peege profile image
peege

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

lilysausage profile image
lilysausage

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

dunmow1 profile image
dunmow1

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

moneal profile image
moneal

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.

Jake364 profile image
Jake364

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

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