Newbie any advice would help

Hi

I am new here and was really just seeing if anyone had any advice or guidance for me, I do understand this is just advice and I am under the respiratory team and my doctor for treatment.

I am 47 year old female was diagnosed with adult asthma at the age of 22, but have always suffering with my chest as a child with constant bouts of bronchitis, whooping couch and had pneumonia.

I have lots of other health problems, and up to a few years ago my asthma was managed very well by myself only ever needing the blue and brown inhalers.

My health has got extremely poor over the last 5yrs I won,t go into all the boring details but I have severe gastric issues which include an ulcer GERD and hiatus hernia, and an auto immune disease, so I guess as I can not fight infections so easily, this may have caused my asthma to get worst.

My triggers are definitely summer, heat humidity and allergies, for the last 3yrs I have got an upper respiratory infection that has triggered severe asthma and I have ended up with trips to the hospital and courses of prednosiline.

My asthma has been extremely poorly managed I have never had a review or been refered to the asthma clinic until this year where everything suddenly changed.

I got my normal upper resp infection I was refused steroids by a locom doctor who refused to believe it would trigger my asthma, 4weeks later I collapsed and ended up in hospital with restricted lung capacity and what they now call severe brittle asthma and CVA plus infection, I was treated in hospital nebulisers steroids intravenous ect, sent home with 60mg of pred, to taper down, and then my problems started I tapered down the steroids as instructed, took 4weeks came off them and within days extreme coughing and couldn't breath or function, could not sleep as coughed all night this was so severe I damaged ribs!!

The respiratory team put me back on 40mg of pred, but my immune system started to break down, and got internal bleeding as the steroids aggravated my ulcer, so I have come off the steroids, I have been put on a new inhaler fostair and my blue one and montulkest at night.

The respiratory nurse I saw treated me like an idiot when I suggested that I could perhaps try a very low dose of pred daily which may help the asthma but not have all the side effects I get on the higher dose, but she was adamant this Is not a treatment plan they offer, even though I know people that do take 5mg ect.

When I am not on the pred I cough all night not a wheeze just an itchy irritable cough with dry throat and catarrah that is impossible to shift, if I do dose off I wake up choking and gasping for air its so scary, I am seeing my own GP next week and my respiratory nurse on the 12th September but would love to have some advice or other opinions to take with me.

thanks in advance x

10 Replies

oldestnewest
  • Hi ring the asthma nurse here on 0300 222 5800. I am sure you should have an action plan agreed with your respiratory nurse. You probably should also have an annual (at least) review with the nurse too if you don't have that already. Good luck x

  • Hi there,

    Poor you. You should know that auto immune diseases and asthma often go hand in hand.

    I would see if you can get a referral to a tertiary Asthma centre, ask your GP about this, and call the Asthma U.K. Help line.

    In terms of your cough, you could try mucus clearing breathing techniques, which are very helpful. (active cycle breathing) There are lots of very good videos of how to do this. Also the the butekeyo stop cough method, can also be helpful (only if you don't have mucus). The other thing I do when I get that constant coughing is suck sugar free boiled sweets, Ricola are good. They just can give you a break from constant coughing.

    Best

    R

  • Hi thank you so much for taking the time to reply. I had the asthma first but it has changed and got worst since I have had the auto immune issues. I do the huffing breathing technique which helps a Bit. And yes discovered the boiled sweet thing. It's strange as the catarrah hits at night not in the day. Been 12 weeks without a proper nights sleep it's awful I will speak to the asthma nurse and my respiratory team thank you again x

  • hi crystile

    I have copd sitting down my breathing is ok but doing anything i get very breathless I have a small battery fan I use also an air cooler this is a fan that has water going through it. basicly this a box with water flowing over a fan. hope this helps

  • Hi,

    I do sympathise !

    I think quite a few people on this forum can relate to what you are saying .

    I would always suggest calling up your hospital consultants secretary and let her know your struggling . She might be able to get you seen by the asthma nurse or an early appointment with your consultant.

    For coughing at night I've found that making sure your pillows are changed frequently and also hypoallergenic is good idea.

    I also keep fishermans friends Locenges and they help stop the cough. Also have your blue inhaler by your bed, sometimes just a couple of breaths of that held to settle things down

    Good luck and don't be afraid to keep asking for more advice !

  • It is true that some people remain on a low dose of steroid for long periods and that may help you, but only your GP or consultant can decide that - you can't get them at Boots! If you have lots of pillows so that you are almost sitting up at night, with another pillow under your knees, you can get some sleep as it seems to help the coughing.

  • Thank you for your reply. Obviously you can't get steroids at Boots. I Have been on quite high doses for months, my confusion was MY GP talked about tapering down to a low dose and really leaving me to control a liveable dose for me, but my resiratory team said thatlow dose daily is not a recognised plan they use but I have seen people on here using this and having good results. Thanks so much for the pillow advice I will try that tonight hope it helps xx

  • I have reflux issues as well (though as far as we're aware I don't have a hiatus hernia), and I do know, because it has happened to me in the past, that reflux does not help with asthma.

    In my case I started having asthma type symptoms early one spring five years ago. I've had asthma for decades so the sensation was a familiar one. For four weeks I put up with it, using salbutamol to try to ease it, upping the amount of preventer medication to the maximum I was allowed and keeping an eye on my peak flow rate - which showed very little change. However, there were a couple of things that were abnormal for my asthma: breathing started to get difficult within forty five minutes of eating something, and exercise seemed to help it. The pattern was so marked and so unusual (I'm an exercise induced asthmatic) that eventually I went to my GP to discuss whether there had been a change in my asthma status.

    As luck would have it wasn't my GP I saw, it was a locum. But he noted from my medical history that I had recent history of stomach issues and suggested that the problem was caused by silent reflux aggravating my airways. He put me on a month's course of PPIs (Lansoprazole) - and the problem was solved.

    Some of the night issues you mention in your last paragraph are familiar to me. Waking up gasping and choking I can relate to - I've had that in the past and it's something I associate with reflux. Have you got the head end of your bed raised to help with reflux during the night?

  • Crystal, I ought to add that by raising the head end of the bed to help with reflux I don't mean use pillows; I've tried that in the past and I ended up slipping off them during the night. The head end of my bed is raised by five inches by putting blocks under the legs.

  • Hi thank you so much for the reply, yes I can relate to everything you said my gastric issues have caused acid to burn my throat and airways at times, so they definitely add to my asthma and breathing problems, especially at night.

    I have invested in a very good v shaped pillow which really helps keep me more upright at night as laying flat I a NO these days, but I have never thought of actually raising the head of the be that way so thank you I will try it xx

You may also like...