I'm new on here (big hello to everyone!) Whilst my symptoms/conditon is no where near as bad as a lot of people on here, I could really do with a bit of advice.
My new GP suspects that I have an allergy to cortisone/steroids as it runs in my family. But well, it seems that he's a little bit confused as to what to do next to help me. He in fact suggested I look on here.
My story is...
I've recently moved from Bucks to the Brecon Beacons - after seeing my Bucks doctor having had a cold and cough for 6 weeks just after Christmas, I thought I'd try a different doctors nearer to my new home (I still work in Bucks and commute back and forth.)
My Bucks doctor listened to my chest and just told me to continue fighting it myself. Which is the usual advice I get from that doctor's surgery. (I had pneumonia 3 years ago that they didn't even diagnose after a few weeks of appointments back and for every few days. I was finally diagnosed when I became very ill at work, was taken to the hospital and was told I had pneumonia and that I'd had it for a while.)
Anyway, tried this new GP surgery in Powys and so far they have been really helpful. I've had more tests in the last few weeks than I've ever had. ECG, Bloods, etc, etc
I had my first ever spirometry last week (eventhough I've been diagnosed as asthmatic during childhood) and the nurse said I was 5-10% above average. My PF hovers around 500 most days. In fact I was worse after the dose of Ventolin.
So I was informed by the nurse that I do not have asthma, it takes 7 years for lungs to recover after pneumonia, and that according to her machine I am perfectly normal. I then mentioned that I've played the Clarinet and Saxophone for the past 25 years, she frowned a bit and then said that's probably why my lungs have got good elasticity. She suggested I make an appointment with the doctor to discuss the continued breathlessness etc.
To make matters a bit more complicated the doctor suspects I have an allergy to cortisone type steroids as it runs in my family. After using the brown inhaler for a week or so (think it's called Beclo'something or other) I felt as though I'd downed a few cans of RedBull each time I used it - my heart raced and I had palpitations, I felt really weak and as though my legs would buckle. Then my skin reacted and I had eczema type sections appear on my face/neck/back/thighs - which are just starting to go after 2 weeks off all meds. After 12 hours and a good antihistimine the heart palpitations etc would wear off. Doctor told me to stop taking it and tried me on another steroid type inhaler (the orange one - sorry I'm useless with names) and I had the same symptoms.
I can barely hoover the lounge without getting out of breath and needing to sit down. I can't walk 2-300 yards without needing to stop because I just can't get my breath. I just can't really do anything other than amble about. I know that compared to a lot of people on here, I am very lucky because I can still do normal day to day activities.
I'm just wondering if anyone else has similar symptoms/experiences, and if anyone knows of any 'preventer' inhalers that don't contain cortisone? Is there such a thing even??
Sorry for such a long first post. I'm just wondering what I can do next to help steer the GP in the right direction as he seems a bit flummoxed as to what to do because of this suspected cortisone/steroid allergy.
There are preventor inhalers avaliable without steroids but they are rarely prescribed on their own
Salmeterol or Serevent is a long acting bronchodilator but there have been problems with just using it without steroids. (People stopped their steroid inhalers and had serious problems) Basically it holds the airways open but without a steroid, the inflamation in the airways is not dampened down. Most doctors are reluctant to prescribe it now without a steroid inhaler or as a combination inhaler.
Have you tried other inhaled steroids? eg Fluticasone or Flixotide? There are 3-4 available.
Also, have you just tried one brand on inhaler? You could be allergic to the propellant.
Other preventers - Intal (Sodium chromoglycate) is an anti allergic type or preventer along with Tilade (Tastes foul though!)
These are just a few suggestions
Kate
Hi,
Thank you for the reply.
The last preventer inhaler I tried was Flixotide and I had the same reaction. Thank you for the other inhaler names - I might mention them next time I see the GP.
Am glad to hear that there are still some options left. My GP was a bit unsure as to what to do next that last time I went, other than referring me to a consultant and then off for allergy testing.
Many thanks for the information.
Cath
HI Caffy and welcome!
Sorry to hear you've been having a bad time of it recently. I think my experience has been pretty similar to yours, though I was luckier as for me the inhalers just failed to work rather than giving me nasty side effects. I do however have the same thing with (mild, for me) childhood asthma, which then more or less went away, and years of singing and oboe resulting in a high PF and above average lung function test results (mostly 540 though I have been known to go over 650 on occasion - I'm also fairly tall).
Like you things are not as bad as they might be - no life-threatening attacks, in and out of hospital etc but I have to walk slowly and pretty much everything makes me breathless so while I can work etc I'm not doing things I normally would. Things got to this point after firstly having swine flu in Aug 2009, then having a cold with lots of coughing in October of last year - so I wonder if the pneumonia and cold could have set off your asthma again, since you had it when you were younger? My consultant (the second one, I saw one before and was discharged with 'hyperventilation', then the whole thing started up again and I was re-referred after I moved house) currently thinks I don't have asthma based on lung function results but they're still looking.
Based on my experience - and of course things may work out differently for you - if your GP can't find an inhaler that works they may well refer you to general resp. consultant, just because the diagnosis is not 100% certain and you can't find an inhaler that works and that you don't react to - if you do, of course, it probably won't be necessary, but my GPs tended to get to the point where they'd be scratching their heads and saying they didn't have the expertise to work out what was going on with me - sounds like yours are getting there too!
I hope this helps somehow - sorry I can't help with the steroid allergy and also hope I haven't talked too much about myself but I thought it might be helpful to share my experience as apart from the allergy issue it does sound similar. Feel free to PM me if you think it might be helpful.
xx
You could also ask about preventer tablets such as Montelukast (Brand name Singulair) or Zafirlukast (Brand name Accolate) they belong to a group of medicines called Leukotriene Receptor Antagonists (LTRA's for short) and work in a different way to corticosteroids.
LTRA's were recently mentioned in the news as a recent study found them to be as effective as steroid inhalers, here's a like to AsthmaUK's response to the news articles.
Thank you for the replies and apologies for not responding sooner. My other half chopped through our broadband cable over the weekend and it's only just been fixed.
Have had a bit more news since my first post - the doctor rang me and said that I have alveolitis as well as Asthma. So I'm being sent off for allergy testing, mostly for the Cortisone allergy and also to see what else is causing the alveolitis (sorry if I've spelt that wrong) and also some tests for something else to do with my lungs.
Philomena I'll PM you as it sounds like we're in similar'ish boats.
Niamh - Thank you for the info. I didn't know they did tablets. I'll have a good look at the link you posted. Am glad to hear that there is an alternative to inhalers if I'm found to be allergic to cortisone or as someone on here said, the propellant in them.
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