Recently diagnosed with lots of questions and struggling

I have recently been diagnosed with Asthma after a very bad chest infection I've had for the the past few months and had difficulties with my GP. I was finally admitted to hospital and started to be treated but this does not appear to be improving, the consultant is seeing me weekly following my discharge, I have been on preds for 6 weeks, and now currently increased from 30mg to 60mg daily due to my lack of improvement, 4 puffs of symbicort twice a day and regularly using my salbutamol reliever and mucodyne syrup, singulair tablets which he took me off.

The hospital and specialist have been great but now it seems that tablets is the only answer and these are making me feel worse and put on lots of weight should I be asking for more tests? should I just be waiting? even on this med my peak flow is up and down 350 to 500, I feel really tight chested constantly trying to clear my throat and out of breath just doing basics around the house.

I am back again on thursday at the consultant and feel now like he's not going to believe I haven't improved much and I am under pressure to be returning to work?

Any advice or help much appreciated

9 Replies

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  • welcome to the mad house!!

    sorry your having a bad time and dont feel like you making anyprogres, asthma is a funy thing and as you will see on here varies from person to person as do meds, what works for one may not for an other. Your cons obviously sees your unwell as that does of steroids for more than a week isnt given lightly, they must feel you need then so take hat as evidence. I may take a while for things to improve as you have to first get over a bad infection and then try to stabilise your asthma. You sound like you have a good cons whos seeing regularly o talk to them, explain your fears and concernsthats what they are there for.

    ont feel bullied by work, i know its easier said than done, i went back too early a few times only to end up worse off than before you started. omeone needsto speak to your enployer and explain stress and asthma is abad combination. ou dont get antmore thanks fo going back too soon and no one is indispensible so put you and your health first as tht more important. ave you had spirometry tests? these are more indepth than peakflows to measure your lung function, or a reversibilty test where you have lung function have a neb then more lung function to see if ant improvement and how much with your reliver? maybe worth asking cons if not.

    good luck

    hope this helps a little

    any more advice feel free to message me and i wil try my best to help and adviceyou

    love andrea xx

  • Hi Martin,

    sorry you're having such a rough time at the moment. hang on to that consultant though, sounds like s/he is taking good care of you. Pred is evil stuff but it does help us to breath. All i can say from personal experience is that its worth sticking with it and putting up with the side effects, I had a year of docs trying to take me off it which only resulted in me splatting, and it is only since they stopped fiddling round six months ago after I had a big splatt that my PF has stabilised - to the point that i am now reducing the dose. It does take time though, esp if you've had a nasty infection. I know it is not easy, but please try and be patient with yourself. after all, if you broke you're leg you wouldnt walk on it till it was fully healed would you, so being gentle on your lungs till they've recovered from the infection is only fair! please dont be pressured into going back to work when you're not fit and making things worse.

    take care,

    ali

  • Hi Martin, sorry to hear that you are having such a rough time at the moment. It can take some time from diagnosis for things to stablilise so stick with it. It sounds like you have a good consultant - something that is hard to come by! Why don't you make a list of your concerns to take to your appointment on Thursday, then ask your cons to go through it with you.

    On the work front, I have been bullied into going back to quickly all that happened was that I ended up having to be off again. If work are not listening to you get your consultant to write to them. Also get his advice on how long you should take off.

    Pred is a horrible drug re side effects but it does help the lungs. The weight will start to come back off when you start to decrease the dose, try not to worry about it too much. And don't worry about having to take tablets to control the asthma, believe me it is worth it in the long run when you can breathe better.

    Hope things start to improve for you soon

    hugs

    Rusty

  • Hi Martin,

    So you did not have asthma as a child? It seems very strange that you suddenly developed such severe asthma off the back of a bad chest infection.

    It is quite common for people to develop asthma after bad chest or nose problems, but it is not normally severe and after the problems are sorted out, the asthma usually fades away. However, there could be some underlying problem with your breathing that has stemmed from your chest infection. You do seem to be taking an unholy amount of medication, and if it is not having much effect, maybe it isn't asthma at all?

    For me, the Buteyko breathing exercises really helped. Type it into Google or visit buteykobreathing.org. I saw a Buteyko practitioner and it really helped me, but it is also possible to learn things yourself from books or videos if there isn't someone who can help you nearby.

    Good luck - hopefully you don't really have asthma and will be able to get off the high dose steroids soon.

  • Very quickly:Do not do butekeyo without the approval of asthma team. It can be dangerous and is not as trumpted on their site a magic cure all.

    It can take a while to get the right mix of drugs for you bear with it.

    Bex

  • I agree Bex, i know better than some how hard it is dealing with such sever asthma so suddenly? i too got severe folling pnumonia which left my lungs scared and suceptable to asthma probs. Xephos, it can happen and does and if ur unfortunate enough to go to a severe asthma clinic you would ee this. Im sure Martins doctor wouldnt give him all those meds without reason and without just cause?

    Martin like Bexs says it can take a while to settle down and adjust meds to whats needed, they whack you with all to get you stable then will try and reduce things as much as poss till you remain stable on the lowest mesd poss, but it will take time im afraid.

    good luck

    andrea xxx

  • Hi Martin and welcome.

    I agree with most of what is being said here and there's no question that developing Asthma in adulthood is becoming far more normal than it used to be. It can be so hard when you are first diagnosed but please remember that it's ok to feel confused about your treatments and I can only say that if you need to ask those treating you any questions then that's a good thing. Being afraid to ask will only make you more worried and that won't do your asthma any good as stress is a major trigger for many of us. What you're experiencing is so normal you wouldn't believe it. I'm sure it feels very alien to you right now but I can assure you everyone reading your post is nodding and remembering what it was like!

    I think the key thing to remember here is that although Asthma is a very widespread health problem with millions of us worldwide, there is no single treatment that will suddenly fix you - as I am sure you are aware. Many people unaffected by Asthma are quick to say ""Oh well, just go to your GP and get aone of those puffer-things and that'll do the trick."" It ain't that easy! With so many treatments available it can be very hit and miss with what will work for you. Just because you may hear a friend say Symbicort or Seretide etc works for them it doesn't mean it will work for you and it's very much a case of trial and error, especially in the first 6 or so months following diagnoses. It can also be made more difficult by the painful task of discovering what your triggers are and believe me, there are some very odd ones about. It can range from the conventional cat hair and feathers to things like lime juice and banana skins (all true triggers I'm afraid).

    I realise all I've said might not be making you feel a million dollars right now but on the plus side I can honestly say that it does get easier. Once your medication has been balanced to control your symptoms and you have worked out to manage and avoid your triggers wherever possible things will improve. I don't know anyone who posts on this board who doesn't have serious ups and downs and there's immense support and pretty good advice to be had if you need it. No one will turn you away.

    If you can look at things positively (and we know how hard it is when you feel lousy all the time) remember that right now this is a very very bad time for you and chopping and changing meds and being fattened up on steroids - (God bless the Pred but I have to say based on experience I'd rather be able to breathe than squeeze into my size 12 Levi's - which I haven't done for some time thanks to Pred and the killer munchies it can bring) - isn't good for your emotional wellbeing but we all go through it and come out of the other side feeling a bit dizzy but somewhat relieved that we got there in the end.

    Regarding work, I know it's easy to say but try not to worry yourself too much. If you aren't well enough there is nothing you can do about it and your con will support you. Do not be pressured by your employer and please do browse through the older posts here as the topic of work and employers has been covered on more than one occassion. Please don't be alone in this as like I said, we are all here to help each other and will do what we can.

    Take care.

  • thanks

    Hi all hope everyone had a good christmas, and thanks for all the replies and support it's been a great help, the 60mg preds seemed to be doing the trick so the cons started to reduce them to 40mg then 20mg, unfortunately I started to go backwards again, a couple of really bad nights puffing away on the reliever even with the spacer, but ended up with another visit to local a&e overnight but at least the nebs and staff where great and they have upped the preds again to 40mg, now is the biggy trying to work out what my triggers are.

    seems difficult that the cons at a&e seem to think that a drop in pf is not a major problem anyway back home and thanks again the support is really helping as are the 'killer munchies'!!!!!. Thanks again and have a great new year.

  • hi martin

    sorry to read about the rough time you've had,

    reading your last post about reduction of pred by 20mg at a time after being on a fairly high dose for more than 6 weeks i've always reduced in a lot smaller amounts than 20mg. Might be worthwhile speaking to your con about doing it a lot slower when you are stable enough to start reducing again as it is less of a shock to your body. also it gives your adrenal gland chance to kick back in b4 you stop the pred.

    downside is it means taking pred over a longer period, upside is should help to reduce the risk of deterioration in your asthma coming off it.

    hope things improve for you in 2007

    scampy

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