advice please

Hello i am new so please bear with me. i don't know what to do or where to turn. I was diagnosed with asthma by my gp two years ago. after much twoing and froing i am on symbicort, 2 antihistimines a day, and the relief inhaler. I was on montelukast until last week when i saw the consultant i was finally referred to after a bad chest infection and asthma exacerbation in oct 2012 - i had steroids for the first time and felt alot better after them (with antibiotics)

this is the advice i have been given - i don't have asthma. my nose issues (sinus probs that a previous consultant told me was part of asthma - and gave me the montelukast)are nothing to do with asthma. he does not know why i have been told i have asthma. i have dysfunctional breathing - symptoms of which 70% cleared up after the steroids. also my peak flow best of a constant 250 is perf ok. i am to ditch the montelukast but if i feel bad to go back on it because then that means i prob have asthma. i don't have allergies and non allergic asthma is rare. and if i do have it its mild. and i had all my tests after being on steroids for a month so yes i may have it.

please what can i do. life has been ok on the inhalers - i could breathe for the first time in years.

the info he gave me is totally conflicting and weird. HELP

any constructive advice please - thanks

4 Replies

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  • HI Maggie and welcome!

    I really do feel for you. I have been in your exact position; in fact I had a consultant appt last week that sounds pretty similar to yours. In my case (saying this in case it helps you to hear from someone else in a similar position) he was saying I do have asthma but it's mild and I don't need to be on all the things I'm on, and that a recent flare-up wasn't asthma but was 'laryngeal issues' and most of it is down to that and dysfunctional breathing - except that I thought the breathing issues which I did have had improved a lot and the physio I see at the hospital doesn't agree with the larynx stuff. Then like you he was saying I shouldn't be on steroids except they do help (and his colleague showed that with spirometry), but then also saying I should expect to have flare-ups of asthma in winter and if I have an infection it's going to kick off? So like you I was very very confused about this conflicting advice, and also when I tried dropping down my Symbicort as advised I felt worse.

    Do you have a personal best from before? 250 doesn't sound great; my personal best is above my predicted but even if my predicted of 470 were right I don't think I'd be very happy with 250! Even a predicted best might help here - there are calculators online to work this out.

    Are you due to see this consultant again or has he discharged you? Has he given you any useful advice, even sent you to a physio, or just told you what he thinks the problem is and that you have to deal with it? Have you seen anyone about the sinus issues? I am no kind of expert but I'd understood sinus problems can make asthma worse and do sometimes go together. You might have some kind of dysfunctional breathing as well - lots of people do with asthma as it's easy to get into bad habits when you have trouble breathing and if so a physio could help - but even though I'm not an expert and can't diagnose on here, if you got better with the inhalers and steroids it seems like asthma is at least a possibility?

    How is your GP? If they are supportive and helpful I would suggest going back to him/her and discussing the appt, and see what they have to say. I've been back and forth in the last few years with consultants etc and had differing views but my GP has generally been great at listening to what I have to say and referring me somewhere else when he felt I needed another referral but I didn't want to see the same cons again as she hadn't been at all helpful.

    I always seem to say this, but I'd also suggest ringing the advice line to have a chat about your options and what they think about what you've been told. You get more time than with the GP, they know a lot about asthma and related issues and can offer practical advice and just also someone to listen to you.

    Good luck! Sorry this has been a bit of a ramble but hope it helps as I know how rubbish it is in this situation with conflicting advice and worrying that you have to stop things that are helping.

  • Dear Philomela

    thanks for your reply. I am seeing the physio at the hospital. It has helped. I don't know what my best peak flow is as its been a steady 250 since sept 2012. i will go back to my drs although they seem to struggle with what to do with me! and i will ring the helpline. it's just so frustrating and unnecessary. good luck for you !

    regards

  • Hope it works! My GP is also not sure what to do with me but he's willing to think and try to help.

    It might help to calculate your best predicted just as a guide. I don't know you or your height/age but I find it hard to believe 250 can be seen as a good figure unless you're really small, and mostly doctors seem to be overly fixated on the predicted best so not sure why he's ignoring it! Here's a calculator to help so next time they say that you can point out what it should be: mdcalc.com/estimatedexpecte...

    Glad the physio is helping though! And good luck with getting it sorted - if you are really stuck you can ask to see another consultant though I realise you might have practical issues, if you're seeing someone at your local, about getting to another hospital/time etc.

  • just remember when calculating PF that it is based on statistical averages - there will be plenty of folk that fall outside of that figure, as I do. Its not unusual for my PF to be 250 (female 172cm tall) and according to that calculator it should be 448. My personal best is 300 so still way below the figure given.

    Im a bit confused by your post Maggie, is it you that is saying you dont have allergies or the doctors? If so why are you on two antihistamines and previous monteleukast? It sounds like you are being given very conflicting advice. Could you monitor your peak flow and symptoms for a while and then go back and see your GP? Or maybe give the Asthma UK helpline a ring for some support x

    Lynda :)

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