Feeling desperate


I'm 39 and I've had asthma symptoms for just under a year. I was diagnosed in late spring/summer, although one of the asthma nurses in the practice didn't think I had asthma - apparently I don't fit the criteria. They started me on clenil, which worked really well but the regular dose still left me with a tickly feeling in my chest and as the pollen count was quite high this year my doctor doubled my dose and told me to go back down to a single dose in September. I felt great in July and August but when I switched to the single dose at the beginning of September I started having symptoms again. They weren't too bad and I waited about a month for them to settle, but they didn't. I went back to the GP and was put on seretide 125, as I preferred the idea of having, what my doctor called, 'a lower dose steroid' (later I found out this was actually a bit higher than the double dose of clenil as seretide is double the strength!) The seretide was making some difference but very very slowly, then I got a virus. While I had it I didn't feel great, but I was expecting that as I had a virus after all! But that was over a month ago and I never recovered. In fact I am now worse than I was when I had the virus.

Pretty much everything I do makes me either breathless or provokes a coughing fit (I have coughy, rather than wheezy asthma). I can't walk at my normal pace anymore and I avoid the stairs. Certain smells really get to me too and I had a very bad coughing fit at the weekend when I got in a cab with air freshener. Even reading my son a bedtime story or talking can make me breathless sometimes. I feel exhausted and irritable all the time and I'm constantly thinking of my symptoms because I can't escape them. Basically, it's having a huge impact in my life.

Last Tuesday I was put on symbicort 200/6 2 puffs 4 times a day and SMART regime as well as nasonex as I might have rhinitis. I know it's only a week and these things take time, but I'm hoping for some words of encouragement from others that have been in my shoes. I'm willing to try anything and will be sleeping with my mouth taped up tonight as recommended in the Buteyko book Close Your Mouth. Any other words of wisdom much appreciated.

Lastly, I have some questions, when they say viruses can be a trigger, do they mean you are more prone to attacks during the virus, or a more general worsening of the condition which can take some time to recover from? Does it sound like I have asthma, or could this be something else - just going back to me not fitting the criteria, according to the asthma nurse.

Thanks for reading and sorry about the rant...

9 Replies

  • Hi Aylab

    just seen your post and lots of views but no messages so I thought I would try to offer you some support

    Yes your symptoms do sound like proper Asthma and I encourage you to keep on at your doctor to get this under control

    I take Ventolin as and when, Seretde 250 Morning and Night and these do help

    Winter is hell sometimes but when it is damp and cold, that is when I suffer most. As you say, the impact on your day to day life is awful and you feel stuck in a rut of feeling so rotten. I know x

    Virus's make our symptoms worse. For example I have had a cough and lots of mucus on my chest for two weeks now and antibiotics had to be started as I clearly had an infection. So if you have a Virus then you will undoubtedly be much more susceptible to a bad chest and all that goes with it unfortunately

    You need a treatment plan in place for when you have bad days

    Do you take Ventolin?

    Have you tried a course of steroids?

    What is your GP saying at the moment about the way forward?

    If you can tell us more and hopefully others will stop by and offer you their advice too

    Sally x

  • Hi Sally

    Thank you for your response and encouragement. Was feeling quite down today as woke up not feeling too bad, but felt awful after the school run. Phoned up AUK to get some advice and the nurse said it sounded like I needed oral steroids. Managed to get an emergency appointment with GP today as they didn't have any regular apps for another week. GP has put me back on the double dose of clenil, which left me feeling a bit confused. This seems a lot less steroid than what I was on (my understanding is that clenil and budesonide are the same strength, or am I wrong?). So went from 1600mcg of budesonice to 800mcg of clenil. Although I do understand her wanting to put me back on the steroid that helped. Hey ho. Will see what happens and report back.

    Also pursuing Buteyko further, but that leaves me feeling a little panicked, to be honest, as I don't feel I'm getting enough air!

  • Hmm, a few things I hope might help!!! My asthma is well and truly out of control, but thats not how it is for everyone, so ignore anything that seems irrelevant lol.

    Buteyko - I had resp physio when referred by my cons, some of the stuff is similar to Buteyko, but during an attack I cant use the stuff as its so much efftrt to just breathe! AUK don't seem to recommend it - just saying I would be careful.

    Seretide and Symbicort - both of them have a steroid and a long acting beta agonist (LABA) in them - a LABA is like a long acting Ventolin, the idea of this is to allow you to need a lower dose of steroid but still keep your asthma under control. You can also use reliever inhalers with this. Symbicort has a SMART regime which means that you can use it as a reliever as well and it gives you a boost with the LABA which works quickly!

    There are a few combination inhalers - another is Fostair - it has the same steroid in it as clenil and the same LABA as Symbicort. Could be worth trying that?

    Steroid inhalers take a while to get into your lungs and to start working. Unfortunately even when changing from one type to another. So the losing control might be partly down to not being covered by an inhaled steroid. I tend to have my dose of oral steroid increased if I am changing.

    Another thing is that asthma isn't only caused by inflammation, which is targeted by the steroid, but also by bronchospasm, which isn't managed with the steroid, but by reliever inhalers (whether just Ventolin or a LABA as well).

    Personally I would recommend sticking with the combi inhalers and dropping down to just a steroid inhaler when you're better controlled.

    Other things - might be worth having a short course of steroids to calm it down. There 5 steps of asthma management, on a brown and blue inhaler that's step 2, so there is a lot more that can be done, so don't despair! Viruses always make me very poorly, I usually end up in hospital and it can also take a long time for my asthma to calm down even after the infection seems to have gone away.

    Hope my waffle has helped! Good luck!

  • Hi Laurs

    Thanks so much for your reply, I really appreciate it. Yeah, the pharmacist told me that I could have the LABA in Symbicort along with Clenil, but by then I was out of the GP and couldn't go back and ask for that, would have been the perfect marriage, I think. I think the LABA in Symbicort is really helping as I have fewer coughing fits that require a reliever (2 in the past week as opposed to 3 a day before that!), but I think the inflammation was not being well managed by the budesonide as still feeling quite breathless with any effort and lungs get irritated with smells, etc. Maybe I should give it longer, but was going by the advice of AUK asthma nurse. I felt the GP today didn't give me enough time to describe what's bee going on. Understandable as she was running emergency clinic and running half an hour late, but god, I can't breathe.

    As for Buteyko, my understanding of what AUK say about it is that more research is needed, but that research to date has shown it reduces the need for relievers. Didn't seem to me like they were endorsing it, but was the most positive of all the complementary therapies mentioned on the site. Will def be careful with it, but would like to feel I'm doing something towards my condition other than just taking drugs, you know? BTW my CP is 5! Positively rubbish!

    I hope your asthma settles soon :)

  • Hi Aylab

    I hope you are starting to feel a bit better. Like you I was only diagnosed with Asthma this year after months of symptoms and chest infections.

    I thnk asthma is confusing as it's different for everyone and some don't have 'classic symptoms' of asthma and some drs presume that you know all about it. My main symptom is coughing and feel as if top of chest/ base of throat is being squeezed.

    Do you have your own peak flow devise at home? If not as your dr for one and get to know what is Normal for you.

    Inhalers I think are a best fit that works for you, I was on seriitide then symbicort then symbicort smart and now back on stronger seritide and ventalin after seeing consultant again.

    My best advise is to read up on this site and maybe see your asthma nurse. If you still feel symptomatic I would go back to your GP and have a chat.

    Lisa x

  • OK, so I just rushed upstairs as my son fell in the bath and was stood in the bathroom for about 30 seconds before I realised that he was using a bubble bath that gave me huge coughing fits previously. Yes, my chest got irritated, but no major coughing fits. And previous coughing fits happened even though I was downstair and bathroom's upstairs! So, I'm thinking: was I hasty in going to the GP today and changing inhaler? Should I persevere with Symbicort for a few more days? (it *is* preventing attacks well, after all). Sorry, feeling quite confused at the mo...

  • Depending on how bad you are, what about ringing 111 to see if you can get an ooh apt or even just some advice on what to do?

    During an attack the auk guidelines say you can take upto 10 puffs of salbutamol via a spacer to sort it out, then another 10, if it doesn't turn it around then you really should think abou seeking some medical help!

    Laura x

  • During an attack the auk guidelines say you can take upto 10 puffs of salbutamol via a spacer to sort it out, then another 10, if it doesn't turn it around then you really should think abou seeking some medical help!

    Thank you for your concern. Thankfully I never had an attack this bad. What is worrying me most right now is how breathless I get and how tired I feel all the time. I feel 80, but am only 39!

    As much as I hate *not* following medical advice, I decided to give Symbicort another few days and see how I get on. I just felt scared at going down a step and going back to the clenil. If I don't start feeling better, back to the clenil I go, or to the drawing board at least.

  • As far as I'm aware buteyko is the only evidence based breathing therapy recommended for asthma and I'm fairly certain is mentioned in either the NICE guidelines or BTS guidelines. - or both. It's a while since I read it so would have to check which one.

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