Help id had enough!

Hi anyone can help. Im 20 ive had asthma about 4years. Iam currently on steriods predliosnie.(cant spell ) i have been for 2 years now. Ive been admitted to hosp 15 times or more due to really bad tightness wheeze and.i feel a blockage in airways and discomfortt in my lungs they take no notice when i say this and pack me of with tablets.. On the blue pump.and purple take tjem up to 7 tikes a day my peak flow can be at 80 at my worse and my best is 300 and that if its a really good.day ive not slept for a week been hosp twice this week no is taking notice of me please help im tired of this (ingore last bit)one.is.takinh not

11 Replies

oldestnewest
  • Hi there,

    which part of the UK are you in? I'm guessing you're on other medications as well as the blue/purple inhalers?

    Do you have an asthma nurse at your GP surgery? Usually you should be on a couple of other treatments as well before maintenance prednisolone is considered.

    It sounds to me like you need someone to be properly taking control of this with you - probably a consultant, but you'll need your GP and asthma nurse on board as well.

    What pred dose are you on? I'm just worried about your bones - at your age being on pred for 2 years can be very serious.

    On 'packing you off with tablets' - unfortunately pred is the best treatment currently available in a flare up... so while it might not feel like they're doing the right things for you, in the short term they are doing what's recommended. However, being on pred continually or repeatedly is very serious, so it surprises me that they're not doing more to make sure that's not required so frequently.

    C

  • Hi Thanks for your feedback. Im just on a puruple the steritede? And the salbuatoal.no others? I have a atshma nurse she says im.on highest dose i can be? So wont change at the min.i take 8 tablets so 40g atm as i was admitted to hosp on sunday im under a specialist at the hosp but all he does is take bloods and dicusses how the months i have been i go every 3months

  • Im in south west. kingston upon thames

  • I would suggest you ask for a referral somewhere else, sounds like your current docs are really messing about. Seretide is usually a pretty good treatment, but I know that it doesn't work for everyone. I am on the highest seretide dose, but its not helping me so they added another steroid inhaler, montelukast (anti allergy meds) a bronchodilator called uniphylinne, an antihistamine and are trying to get me off the prednisilone. A new study has found that seretide doesn't work for everyone, and montelukast may then make a real difference. Lots of pred is bad for you and you should make sure youre on something for your bones (it's pretty standard but sounds like your docs aren't doing much) I'm on more meds than you and I know they still feel that they have a few options, I'm a bit complicated because I was quite well controlled until about 6mnths ago, which affects my treatment as it suggests something a bit weird is going on. If I were you I'd give the asthma nurses on here a ring, but I thought I'd let you know my stuff to show you that you are nowhere near a point where they should be settling for long term steroids! Have they looked into wether something other than asthma could be affecting your breathing (VCD, GORD, anxiety, bronchostasis etc)? Have you had a spirometry recently? If you didn't show much reversibility then maybe something else is affecting your asthma? Do you find the pred helps?

  • hi soph thank u for getting in touch. I take 4puffs each morning and night for my purple one ive been on monulest it didnt help. The pred help but only on a higher dose and when they say come off u wheeze again so they said i csnt come.off them. I think im reyling to much the steriods as beem on them to much

  • no worries, obviously its difficult, we dont know your exact medical history and cant offer any actual medically type advice - but it really doesnt seem like they are looking into alternatives to steroids. I know for some people control can only be gained with long term steroids (although usually this is at a fairly low dose) but i think this is only really when other options have been exhausted, i only find the real benefit to serious attacks when im on 40mg or more, but i just feel so unwell at these doses that i cant do anything, so my consultant is thinking about trying to stop them completely and save the high doses for when i have really really bad attacks. there comes a point where the side effects seem to outweigh the benefits, and it sound to me as though you arent controlled even on high doses. Obviously your consultant will know more about it than i do, but i think you should deffo discuss with him whether they should just be putting your steroids straight up. A&E increase steroids as a standard treatment for asthma, but in some people this isnt always the best option. Have they ever measured youe exhaled NO levels to see how much inflammation there is in your lungs. My inflammation does go up and down based on steroid doses but is much more affected by inhaled than oral. Its not a perfect measurement, but it can help them to work out how effective different treatments are.

    Is there anything you feel contributes to your asthma? or any treatments you think might help? I find it helps to go into appointments with ideas - often they are wrong, but i think it can help them work out how uncontrolled things are, and also can pinpoint symptoms. (eg when i went in and asked to stop my uniphylinne they asked why and i mentioned how tachy i am on it, this has led them to look into whether cardiac symptoms might be contributing to my breathlessness as my blood levels werent high enough to cause such a high HR - but i didnt know that so just assumed it was medication side effects rather than anything else) It helps to be really proactive in recording stuff. specifics like symptoms, peak flows, inhaler usage, time off work, things that limited what you could do etc. and take these notes to your appts to go through with them. Like i say though, it doesnt seem like your current docs are really taking an active enough approach, and so it might be time to ask to be reffered on.

    like i said at the start, we cant offer medical advice - i can only talk based on my own experiences, ive probably rambled a lot as im trying to work through all this stuff in my own head - but hopefully itll give you some ideas/thoughts! :-)

  • Thank u its has helped. No they havent explored alot im currently keeping a dairy because ive had it and want it sorted no ive had a test for immlation test you said. Ive noy really had anything that has been benefictial and i dont know why and they dont know why my asthma flares up so reguarly i dont know really know enough to know any oter treatments

  • its really tricky, since your asthma is so uncontrolled have they confirmed it IS asthma thats causing all your problems? Especially as you havent found any benefit from any treatments? even if you do have asthma, it can be the case that there are other things causing most of your acute breathing issues and the asthma 'underneath' is much less severe. It might help to know things like what your co2 levels do (helps rule out some things that cause a much higher resp rate with more air movement than asthma), i cant quite work out from your message if you have had the test for inflammtion but that might give clues too, tesing for VCD and GORD are things that commonly affect asthma and will reduce how well you respond to typical asthma meds. Im having a lot of similar issues at the moment, they cant work out why my breathing is so bad at the moment - especially as the attacks seem to be fairly short lived (so ill be really ill and then quite suddenly turn the corner and go to a fairly stable place where i am wheezy but not too badly at all) If you feel like you dont have any ideas for treatments and stuff then id suggesting ringing the AUK nurses - they can chat things through with you and will be able to give much better advice than anyone on here could! When are you next seeing our consultant?

  • Sorry to hear your asthma has had a turn for the worse Annabelle.

    You have been given some very good advice from others so not really much more new ideas to add.

    I agree that you have a few more lines of treatment you can add before pred is used long term.

    Although it is a fantastic drug to use during attacks/flare ups it is not nice for long term use.

    I have been on it continuously for about 20 years in varying doses from 40mg to my 10mg maintenance dose-I am now experiencing some awful side effects and some days these get me down more than my cr@ppy lungs.

    I hope your consultant get get control over your asthma again soon x

  • I am sorry for you, seems like a tricky case! i am an on/off asthma sufferer too in an acute period. I have been on ventolin and all that crap a lot and now I seem to have found a very good natural therapy, called the salt therapy. I have been going since early March and really pleased about it! has helped me a lot in my breathing and the inflammation to go down, also I use less ventolin now. Highly recommended, saltcave.co.uk/index.html.A... if you change your diet can bring immediate results, cutting down on dairies and all allergens like nuts etc. I know they say it everywhere but it does make a difference if you can resist those camembers etc.;) good luck

  • Hi,

    How about calling the AUK nurses on the free number? They are really friendly and have lots of knowledge so can tell you more about other treatments which yopu can then go armed with to discuss with your cons.

    You mentioned you feel a blockage in your airways. I felt for a long time thsat the bottom half of my lungs weren't inflating properly so was put on an inhaler called Spiriva which is normally used for COPD but i felt the benefit within days, might be worth discussing with your cons.

    x