The next step up??

Hi all,

Well...I'm moaning about nothing really, and I apologise, but despite taking more Symbicort and salbutamol than I could count, and having singular at night as well, my peak flow is hovering around 350 and I'm feeling pretty rubbish. I saw my GP last Wednesday (about something totally different) and while I was there he asked how my breathing was. I said well so-so to be honest, sometimes I manage it fine but there are days when my husband will say ""what's that weird noise"" before realizing it's coming from my chest! his response was oh dear that's not brilliant, but you're on pretty much maximum asthma medication so there's not much else we can do but hope it gets back to normal soon.

There are lots of people on here with asthma worse than mine and I feel silly complaining, but I actually found this answer quite depressing. Surely there's something else they can try?? I'm struggling with so much at the moment, ME symptoms as well, that to be just sitting around hoping the cough/wheeze/breathlessness suddenly improves feels like a step too far. I've had 2 courses of prednisolone since Christmas Eve, and they've both helped, but it's almost as though once the course finished the boost they provided has ebbed and I've taken 3 steps forward and then another 2 back..so I'm better than I was before but not as good as I thought I should be, if this makes sense?

Just wondering if anyone else's GP has suggested anything else useful other than the meeds I'm currently taking? Anyone who has read my previous posts will know, my faith in doctors is minimal at best and I'm more than willing to believe that mine are useless!!!

Thanks for any help anyone can offer xx

7 Replies

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  • Hi MillieMoo!

    So sorry to hear that youre going through a tough patch with the health problems at the mo.

    I think there are many other treatments that you might try although perhaps they need to be prescribed by a cons. Do you have a.lung cons? If not it might be a good idea for asking gp for a referral? I taoe singulair also with oxeol. I have maintenance pred and home nebs and O2 and was on xolair till cons changed her mind ;-)

    So yes i think defo dont give up hope. I know its just so annoying that it just takes time to get hold of the best treatment for you. Also am totally with you on the annoyance of other health issues making extra nuissance: im paraplegic and in renal and heart failure. So rant away cuz ill be the first to say that life gets really tough sometimes...

    Hope you feel better soon

    Rose xx

  • hiya, sorry to hear you're going through a rough patch, i think this very changeable weather is disagreeing with a lot of lungs! like rose said, i'm sure you wont be on all the possible treatments. i dont know much about the symbicort smart regime, i know its a little different to what im on, i wonder how they decide which type of treatment people get!?! but there are things like steroid inhalers, long acting relievers, leukotriene receptor antagonists (singulair), antihistamines, maintainance oral steroids, theophylinne tablets (also - theophylinne is in tea and choc so i maintain that these are a vital part of my asthma regime!). these are what i'm on,and i'm not running out of things to try, i think im running out of things my current consultant can give, so i'm having to go elsewhere, but i know there are plenty of other treatments out there. plus there are things that can treat things like reflux if this is something that is triggering your asthma (there is a discussion about this elsewhere on the boards if you are interested!)

    i know there is a limit to what GPs can try, has he tried you on inhaled steroids and long acting relievers in case it is just the symbicort you're not getting on with? i dont really know how this decision works, maybe some people are more/less suited to it!

    if he is running out of options and you are still struggling then i'd definately ask about a referral to a lung specialist as they will have a lot more treatments and tests available to try (three of my meds were started by the gp, the rest by my consultant) dont feel silly complaining, asthma is asthma, and if you are feeling rubbish then you should be treated! i get the impression that in a well controlled asthmatic, if they DID have a course of pred, it wouldnt make them feel any better, the fact that it makes a big difference seems to suggest your lungs are unhappy!

    really just a reply to say there are lots of treatments out there, so dont give up! if your GP is unwilling to help you then see another. hope you feel better soon x

  • Thanks for the replies :-) Yes I think the weather is disagreeing with a lot of asthmatics at the moment, my 4 year old has just been put on Singulair for her asthma because she was waking every night coughing; luckily for her that seems to have done the trick but I'm a bit unhappy that she's had to resort to that at just 4 years old. On the other hand my 14 year old is fine and in fact admitted to me the other day that she keeps forgetting to take her inhaler, if only me and my 4 year old could get away with that!!!

    I've progressed from QVAR to seretide 125 to seretide 250 to symbicort over the last 2 years, combined with montelukast (Singulair) at night, so maybe it is the limit to what my GP can prescribe?

    I quite possibly don't help myself with my mental attitude towards my asthma - I've always hated having it and in fact when I was about 10 I went through a stage of refusing to take my inhalers. How I avoided A&E I don't know, but my mum was worried sick I do remember. Obviously I don't do that now, but I do have very odd ideas about where I will and won't take my inhalers - in fact, if I can avoid taking them in front of anybody else at all then I will do! I've used all sorts of excuses at work, at friends' houses, out and about - even at home! - to sneak off to use my reliever, which I guess doesn't help things and isn't very mature. The thought of going to see a specialist makes me get goosebumps and start to panic!!

  • Hmm yes this weather is not lung-friendly as I'm discovering! And I thought I was doing so well with the control.

    The GP could change things around (if you're on Symbicort 200/6, put you on the 400/12 and lots of it, for instance - though my dose of 400/12 was prescribed by a cons so maybe they can't).

    HOWEVER - and you won't want to hear this I know - if you're on that and it's not really helping I think it is time for a referral. This time round (I was referred before when it was more of a diagnostic issue) the GP said 'right, I have to refer you now because I'm stuck' when I was on Ventolin, Atrovent (not an obvious choice for asthma but GP's idea, I like it, helps me sleep), Intal (an old one, because the steroids at that time didn't seem to work - they do now) and double montelukast. There could be some switching round like others have said, but I think it might be best if a cons with more experience than your GP is the one doing this, as they can also do some more tests to see what might be going on.

  • I saw my GP last Wednesday (about something totally different) and while I was there he asked how my breathing was....his response was oh dear that's not brilliant, but you're on pretty much maximum asthma medication so there's not much else we can do but hope it gets back to normal soon.

    There are lots of people on here with asthma worse than mine and I feel silly complaining, but I actually found this answer quite depressing.

    Lots of empathy here. I don't think this is a competition where only the ""winners"" get to complain. Frustration I think is always relative to what we've ourselves (not someone else) have lived through, what we think we can handle, and what we know we can handle and are just frankly sick of handling.

    I don't think it is strange at all that you would find his answer depressing. Even when my doctor is sympathetic, I know I find my doctor's sympathy and concern often harder to bear than when we just stick with the facts of what to do next. Coming from him it makes everything seem more serious and I really don't want to be thinking that way.

    I know it worries him that I keep having symptoms even on fairly high doses of oral steroids, even though nothing life threatening has ever happened. But the fact that he takes it seriously scares me a bit.

    ""Just wait it out"" is not really much of an answer. Even if it were the only solution (it isn't), there is more to ""waiting"" than just waiting. Emotions need to be taken care of at that point and not just the body, because waiting is hard when one has a life to get on with. Or at least that's the way it is for me.

    It would be nice if some of doctor's training included more about helping people with the emotional side of living with asthma that isn't controlled even when one is doing everything one has been told to do.

    Even if it is nothing more than pointing out resources like this AUK forum, it would help if doctor's did know more.

    I've read tons of articles on best practice over the last few weeks and I honestly don't think I've seen a single one that discusses this issue. Mostly when they get to the topic of difficult asthma, they discuss compliance issues and medical options. Maybe I'm looking in the wrong places? Not every doctor is a natural born empath. If best practice manuals don't give guidance to them, what will?

    if I can avoid taking them in front of anybody else at all then I will do! I've used all sorts of excuses at work, at friends' houses, out and about - even at home! - to sneak off to use my reliever, which I guess doesn't help things and isn't very mature.

    Somehow using an inhaler in public feels a little like combing one's hair in the middle of a business meeting. I also prefer to inhale in private.

    I quite possibly don't help myself with my mental attitude towards my asthma - I've always hated having it and in fact when I was about 10 I went through a stage of refusing to take my inhalers.... The thought of going to see a specialist makes me get goosebumps and start to panic!!

    Scary or not, it is still the right thing to do for yourself. If you are on all the standard options, that sounds like he should be referring you. And if he isn't, then you do need to be pushy and ask to be referred. Maintainer medication is supposed to be keeping exacerbations at bay. If you are on everything he can prescribe short of oral steroids and you keep needing oral steroids every time you go off them, it needs to be checked out by specialists because

    (a) once oral steroids are turning into a routine stop gap solution there are trade off one needs to think of between control, risk and side effects.

    (b) there are things that look like asthma and aren't - both acute and chronic. Early on, I was tested for whooping cough (negative)among other things. It is going round thanks to all those parents who think their kids don't need the vaccine. Even if you had a vaccine as a child, it wears out.

    (c) there are things that can exacerbate asthma and make it difficult to treat. Unless both conditions are treated the asthma is hard to control: GERD and chronic silent sinus infections would be a good example but there are others.

    (d) once asthma gets complex or difficult, getting it back under control seems to me to be as much art as science so it helps to have someone experienced who deals with lots of cases.

  • Hi MillieMoo

    I've been struggling with my asthma since Oct - courses of pred - meds up to 400/12 symbicort 4 times a day and montelukast and as much ventolin as I can stand! I've been seeing a gp at my surgery who is resp trained but when I saw him last wk he said he was at a lose as to what to do and he's just done blood tests to see if I'm allergic to something and if they don't show anything he's going to refer me to a consultant. I think you should ask for a consultant referral, gps seem to have a limited knowledge over asthma or are a bit less experienced with more difficult cases.

    I don't know what happened with my asthma - I was fine til I had a cold in Oct and since then my meds seem to maintain me at a level just above being very serious but bad enough to stop me doing things apart from odd days - I've just had a couple of fairly good days but could feel it getting worse again last night. I had the same experience as you when stopping the pred I got worse again - but on a high dose of pred I could function and get into work. I also feel the 3 steps forward, 2 steps back thing - I'm better than I was but not as well as I should be.

    Hope you get sorted out - I saw a dr just before Christmas who told me I would be as I am now for the rest of my life - a great help in keeping my spirits up - I don't think they always understand the impact asthma can have on your life!

  • Hellooooooo :-D

    There's still plenty that can be tried but (and u know you don't like it) it pretty much needs to come.from a respiratory consultant.

    Like you I got to a point where my gp.couldn't try other things but luckily fir me he admitted I was out of his field of expertise, not just live with it like youts seems ti be saying.

    The good thing about seeing a respiratory cons is that they will.check everything to see whats going on so they.can target treatment rather than just prescribingmeds that work for people in general.

    Can I also suggest.a.call to the lovely AUK nurses on the helpline? They really are.very helpful and have lots of info on yhr latest treatments etc.

    X

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