New to forum but need advice

Hi, I was diagnosed with asthma about five years ago (mild) but it has increasingly worsened since then. I had a hospital stay for five days about three years ago and several A&E visits since. After losing a few stone and going to the gym four times per week, my asthma improved but since September it has really deteriorated to such an extent that I can only walk a few yards without either coughing or wheezing, and the gym is definitely out of the question.

Since Sept, I have had various antibiotics and steroids every month but after coming off the steroids for about a week, the symptoms come back.

I feel really fed up and worried that this is how it is going to be forever. I am not sleeping due to coughing and the symptoms are affecting my job which I love. I also feel quite light headed - is this due to lack of oxygen? I am currently on Seretide 500 and Singulair. I also have to use the blue inhaler approximately every hour.

I have now been referred to a hospital consultant but as my asthma nurse keeps telling me that I am on the max dose, is there anything else that can be done?

Please advise if anyone knows how to get me back to 'normal'. I feel like asthma is ruining my life. My normal peak flow is 420 but is currently 210.

14 Replies

  • Hi Josie, Welcome to the forum and I hope you find it useful.There are more drugs that can be tried, so don't worry too much about what the asthma nurse said..Was your asthma triggered by a cold in Sept? If you are vulnerable to colds (like a lot of us on here) then it is worth taking extra vits especially Vit C. It takes a while to build up but definitely helps.

    Another common trigger is hayfever/rhinitis - again there are different treatments that help. My son had really bad rhinitis which worsened his asthma, but once he started effective treatment for that, it helped his asthma.

    Keep a note of your symptoms, peak flows and how much sick leave you've had, and show the consultant when you have your appointment. That helps save time during the appointment. In the meantime, keep going back to your GP - it's always better to get checked out in case you have a chest infection (they can creep up suddenly) or if you need urgent treatment. It's also important your GP knows what's going on - so don't just wait for the consultant's appointment.

    Good luck and I hope things improve for you.

  • Thank you Angievere

    Thank you for the advice. I didn't have a cold at the start and am not sure what has triggered the effects. I have been prescribed about seven lots of antibiotics since September but they do not seem to improve the symptoms. The only thing that clears me up for about a week or so are steroids and I am a bit concerned about the long term effects of these.

    I will definitely take the advice on the vit C as hopefully it might give me a boost.

    Thanks again x

  • Hi Josie, The fact that you have been on a lot of antibiotics shows you have been getting chest infections so strengthening your immune system with extra vits may help. I starting giving my teenage son extra vits 2 yrs ago - vit C and D, Sellenium, multi vit and Omega oil. I also take multi vit and calcium for my bones (I have life long asthma too). Also trying to live a healthy life - plenty rest, cut down on alcohol, bit of exercise where possible (altho I'm a fine one to talk on the last one!).

    Once in a cycle of antibiotics and steroids, it can be hard to break it. But I have had long periods of bad asthma and chest infections, steroids etc, and thought there would be no end to it. Always starts with a cold. But I do have good stretches and I am sure you will too. It's a matter of finding the right drugs to bring your asthma under control, and learning what the triggers are and how you can combat the triggers (eg dust mites are a trigger for us, so change bedding twice a week, renew pillows several times a year, lots of damp dusting etc).

    Sorry I cant be of more help, but dont give up hope and do keep going back to GP. xx

  • Hi Josie,

    Welcome to the forum. Sounds like you haven't been having a great time so I hope something gets sorted out, and I'd echo angievere's advice about going to the GP if you have problems while waiting for your consultant appt - I was a bit reluctant to do that but I think it did help and the GP tried me on a medication she thought the hospital was bound to try, in order to save a bit of time (in the end hospital didn't try any meds but I'm a strange case).

    I'm definitely not saying it's what's actually causing all your problems, but it's possible the light-headedness could be due to hyperventilation - I've heard all asthmatics hyperventilate sometimes. Maybe worth asking someone? Though perhaps best if you're worried about feeling light-headed check with GP/nurse anyway.

    Hope you find some answers and feel better. xx

  • Thank you

    Thank you for the messages. I think that I feel a bit low as it all seems so uncontrollable. My peak flow has now dropped to 200 so its definitely back to the docs tomorrow!

    Fingers crossed I will pick up. xx

  • josie if your peak flow is that low im not sure its a good idea to wait until the morning. if you get any other symptoms it may be a good idea to visit a n e tonight. the light headed feeling could be lack of oxygen, stress, using the inhaler etc but you need to tell the doctor that.maybe give the staff on here a ring but if i was you i would go to hospital xxx

  • if your pf that low i would echo and say either go OOH or hospital....

    lightheadedness can also be due to overuse of salbutamol - blue- inhaler if you are needing to take it so often, especially with little effect :(

    hope u feel better soon x x x

  • hi josie

    u feeling any better


  • Been to doctor.....

    Hi, I only picked up your messages this morning but I did take your advice and booked an emergency doctors appointment who confirmed peak flow now at 190 (nice!). I had nebuliser and have been put on steroids and antibiotics.

    I feel really lousy tonight and although exhausted I am unable to lie down due to coughing. At least I know that the steroids will make me feel better in 48 hours. Has anyone had any long term effects of steroid use as this is my 6th or 7th dose since September.

    I am really sorry to keep asking so many questions but when is the 'right' time to go to A&E as I dont want to waste their time. I have been twice, the first time I was sent by my doctor and kept in for five days. The last time was about three weeks ago and I had to have three back to back nebs due to low oxygen level and then I had to wait seven hours to see a doctor so I am really reluctant to go unless I really need to.

    Thanks for thinking of me. Josie x

  • thats wot this forum is for josie - asking questions and supporting each other as we all have varying degrees of asthma and various and similar experiences :)

    i have been on longterm continuous prednisolone of varying amounts for past 14-15 months and still cannot control symptoms and having very severe attacks ending up in hospital around 1-2 x per week at the moment - bad times, got readmitted tonight :( not sure there are side effects with short term use of pred its more with long term use, so you should be fine side effect wise :)

    as for symptoms, you should find your pf starting to pick up tomorrow :) hope u feeling better soon, feel free to ask as many questions as u want, advice ad support etc, and feel free to message me if u prefer :)

    and i know u feel reluctant to go to a+e as do i sometimes, but please dont put it off, if u need to get help!!

    x x x

  • Snowygirl

    I feel a bit better today - not because my asthma has improved much but because I know that its not just me! Everyone else I know who has asthma only appear to have very mild symptoms and although I dont want anyone else being poorly, its nice to have someone to bounce questions off.

    It must be awful for you to be suffering that much. Have you had asthma all you live? I only started about six years ago. Have you seen a specialist and did it help?


  • Hi Josie,

    I thought I was reading my life storey with all the similarities! I was diagnosed 3 years ago, since last sept asthma off the wall. Just back from drs, more antibiotics and steroids. Feel so low, I will be interested in any replies you get because I don't know where to go from here. Consultant again on july 4, will have a list if questions as long as his arm for him.

    I'm sorry you're so poorly, I hope we both get the answers we need.

    Take care darling xxx

  • I'm sure it must be really stressful for you; sounds like you've had a horrible time of it. One thing I would stress is that often once you've got seen by the right people, and they put you the right drugs and broken the cycle, things get SO much better, so keep reminding yourself that it might well not be forever. Also, although the long-term side effects of steroids aren't great, it does sound like you need them. Maybe just make sure you eat lots of calcium rich foods, and do some weight-bearing exercise, as it can affect your bones. And if you see a specialist or even your GP, just voice your concerns about the drugs. There could be a number of reasons for the lightheadedness, but I find it often happens to me when I've taken a lot of ventolin.

    With regards to going to A & E, see the guidelines on the website generally. Also, it's always worth being safe, even if you do end up hanging around; I always just take a book with me if necessary. Feel free to ask away :D

  • hi josie

    wanted to private message you....

    anyways, wasnt formally diagnosed until 9 years ago, under cons for past 2 years when became very severe. confirmed brittle by asthma/allergy cons last year.

    got new treatment and management plans in place and started new injection treatment - xolair - last week as all other meds not working effectively.

    hope you are getting relief of symptoms, feeling okay and are getting help + Support from your consultant . most importantly are on the right meds!!

    x x x x

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