Just come off steroids and still not 100%

Good evening to you all :)

So sorry to hear there are people with Asthma who are struggling in this heat/humidity and with grass pollen.

I was only diagnosed with asthma the beginning of this year following two chest infections then pneumonia etc (apparantely I have had mild asthma ll my life - just never been tested for it).

Anyway, two weeks ago today I cam down with a chest infection once again. I went to the Dr and got antibiotics, ended up in A & E with two lots of nebulisers, came home still very wheezy. Was treated very well in hospital I must say !

Then two nights later even more wheezy/tight chest, went into A & E again, seen by a junior Dr who wasnt even going to put me on a nebuliser ! She said she only hear the wheeze in my throat lol....I stressed to her for nearly half an hour to listen - even my voice had changed. We moved to another room she listened again and said oh your wheezing has changed - it is deeper down in your chest - OMG I did get very frustrated, why do they not believe you even though the evidence was there. So I then had two further lots of nebulisers. The second one I had had salbutamol & a steroid in. It was so so strong I could hardly breathe throught the mask - it made me more wheezy ! no idea what they put in that one. HAs this happened to anyone else.

Anyway they let me out of the hospital - wheezing away quite badly and my peak flow was still below 300....I lost faith second time going in as had such a good first experience.

Luckily I had an appointment with my consultant scheduled (good timing) - and he put me on a 7 day course of steroids, I finished these three days ago and still have alot of wheezing and find when I lay down to try to go to sleep it is such a horrible sound. It seems the blockage/cattarh is very low/deep in my chest, is this normal ?

During taking the steroids I have had insomnia every night - so wide awake and still am even though finishing the course.

I am also on a new inhaler now - Fostair, what are peoples experiences of this ? I find it much better than QVAR as in I feel it is opening my airways alot more as I have been struggling to breathe for nearly two weeks. But still have a cough and alot of congestion in my chest.

I had my follow up appointment with teh Royal Brompton in London a few days ago as I have sleep apnea too :'( and they are going to take me in for three nights to do further tests but they said they wont get me in for 3-4 weeks the soonest...

Thanks for listening :) Any answers will be appreciated. So sorry so long I am hopeless at writing short posts.

I just wish we could all find the perfect solution for our asthma so we can enjoy life to the full again. I just want to be healthy again so I have all the energy to look after my 2.5 year old twins :)

Michellex

6 Replies

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  • Hi Michelle,

    Sorry to hear you are struggling with your asthma at the moment. I don't know much about chest infections (I don't seem to get many) but I would go back to your GP as it sounds as though you may need the steroids for a bit longer. I often find that I sometimes need an extra week especially if there has been a delay in starting them. A few months ago when my asthma was playing up, the nurses on the helpline said that I should be going back to the doctor at the end of a course to check I don't need any more. Another idea would be to check the infection has totally cleared up. Hopefully changing your inhaler would also help. I went from QVAR to Fostair which is the preventer plus a long acting reliever and found it to be very beneficial. Have you got a follow up appointment with an asthma nurse after this change in inhaler? Again this is something which the helpline told me I should be doing. You could also give them a ring if you haven't already.

    I am glad that you had such a good experience of A&E the first time. I think many people will agree that treatment can be variable (I rarely wheeze so find many drs can be quite dismissive of my clear chest even if I am struggling). Although it is hard, try to focus on the positive experience so it doesn't prevent you from getting help again if necessary. It is good that you could get the doctor to listen in the end although I understand that this would have been very stressful, especially if breathing is difficult! I sometimes want to say to docs ""do you think I actually want all these meds?"" I find Nebs taste foul. I may be wrong but I think it is the atrovent (I have just started an atrovent inhaler which is also awful and almost takes my breathe away).

    Take care

  • Hello Kayla

    Thank you for taking the time to respond to me, I think you are right regarding steroids. Like you I was on QVAR and they just changed me to Fostair and also with me I find it much better and helps to keep airways open :) I am pleased to hear it is working with you too. I never knew about Asthma before how it affects peoples lives if not under control, totally understand now.

    Unfortunately I am not registered with an Asthma nurse yet which is why I think this is not under control and I just get constant colds and chest infections since December, am exhausted to be honest and never had one hour or one days bed rest when I have been really ill as have to look after my two year old twins every day :) I am under a consultant at the moment, who diagnosed me, he was fantastic. I have now called the Dr's surgery to get an apppintment with the Asthma nurse thank you (although a different one at the surgery to the one who didnt test me for asthma lol)...

    Thank you, I have spoken with the asthma nurses about a month ago on this site, they were more than helpful, I learned alot and am so grateful such an organisation like this exists. Are the Nurses on this site volunteers ? They are so knowledgable and helpful.

    I can imagine it is very frustrating for you when the Dr's can not hear a wheeze !! I have had that a few times I do understand you, the Triage at A&E had only just returned back to work after two months off due to his Asthma, same as you where he has the chest tightness and no wheeze ! HE was mostly on A&E beds every night when working he told me.

    Yes you are right about focussing on the positive experience, they were amazing the first time I must say. Aaaah you couldnt have put it better regarding the Atrovent !! LOL I had to take the mask off for a second to catch my breathe. It made me very wheezy - very odd.

    Thanks again and hope Fostair continues to be good for you ;)

    Michellex

    Hi Michelle,

    Sorry to hear you are struggling with your asthma at the moment. I don't know much about chest infections (I don't seem to get many) but I would go back to your GP as it sounds as though you may need the steroids for a bit longer. I often find that I sometimes need an extra week especially if there has been a delay in starting them. A few months ago when my asthma was playing up, the nurses on the helpline said that I should be going back to the doctor at the end of a course to check I don't need any more. Another idea would be to check the infection has totally cleared up. Hopefully changing your inhaler would also help. I went from QVAR to Fostair which is the preventer plus a long acting reliever and found it to be very beneficial. Have you got a follow up appointment with an asthma nurse after this change in inhaler? Again this is something which the helpline told me I should be doing. You could also give them a ring if you haven't already.

    I am glad that you had such a good experience of A&E the first time. I think many people will agree that treatment can be variable (I rarely wheeze so find many drs can be quite dismissive of my clear chest even if I am struggling). Although it is hard, try to focus on the positive experience so it doesn't prevent you from getting help again if necessary. It is good that you could get the doctor to listen in the end although I understand that this would have been very stressful, especially if breathing is difficult! I sometimes want to say to docs ""do you think I actually want all these meds?"" I find Nebs taste foul. I may be wrong but I think it is the atrovent (I have just started an atrovent inhaler which is also awful and almost takes my breathe away).

    Take care

  • Just a thought with the royal brompton with respect to your sleep study, could you see if they book last minute cancellations? If you were in a position to be called up last minute to save the appointment being wasted, you would get in sooner, and they wouldn't waste the slot. Worth a try?

  • Thank you good idea

    Just a thought with the royal brompton with respect to your sleep study, could you see if they book last minute cancellations? If you were in a position to be called up last minute to save the appointment being wasted, you would get in sooner, and they wouldn't waste the slot. Worth a try?

  • Brompton may want to wait until active infection has cleared up so they get a true picture rather than an acute on, so if wanting a cancellation I would suggest explaining you have unresolved infection. Sorry youre struggling, have they sent off sputum for culture and sensitivity tests to make sure you have the right antibiotic? It can take a while even after infection is successfully treated, to clear the chest of remaining goo - and this *may* be what you are experiencing. However if what you are coughing up is still rusty brown, green or thick yellow then I would suggest taking a sample to GP in sterile pot and asking for it to be sent for culture. This will ensure your infection js treated with the right antibiotic.

    A respiratory physio can also gjve you ACB exercises to help you clear chest secretions, and if appropriate for you, an acapella or flutter device which also clears your chest.

    Lynda :)

  • Hello Lynda

    Thanks so much for your reponse and useful advice.

    That is a good point regarding the Brompton although I was hoping they could fix me and send me out well again lol....just been so ill since December am exhausted from it all.

    I have not had any tests and I did have five difference types of antibitiocs early this year which didnt work, so I will go to the Dr's this week to ask regarding these tests, very useful thank you as I never knew these existed. Unfortunately it has been yellow since January this year and not changed. Always have a wheeze which is very deep in chest. Think the pollen is affecting it as with everyone else too.

    Thank you have written this down to take to Dr's this is great thank you so much :)

    Michelle x

    Brompton may want to wait until active infection has cleared up so they get a true picture rather than an acute on, so if wanting a cancellation I would suggest explaining you have unresolved infection. Sorry youre struggling, have they sent off sputum for culture and sensitivity tests to make sure you have the right antibiotic? It can take a while even after infection is successfully treated, to clear the chest of remaining goo - and this *may* be what you are experiencing. However if what you are coughing up is still rusty brown, green or thick yellow then I would suggest taking a sample to GP in sterile pot and asking for it to be sent for culture. This will ensure your infection js treated with the right antibiotic.

    A respiratory physio can also gjve you ACB exercises to help you clear chest secretions, and if appropriate for you, an acapella or flutter device which also clears your chest.

    Lynda :)

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