Medication

[Wheezycat]

Today I had a review on advice of Asthma U.K. nurse, who was concerned that I take four puffs daily of Symbicort normally. Over the summer I have tried to cut down to two per day a few times, but there was always something that pushed it up again. The nurse I saw agreed, and said (like asthma U.K. nurses) that I may need Montelukast.

We agreed I shall try for a period to see how two per day works, and if needed make a GP appointment. Also a friend of mine who is a doctor said I should not be coughing at all, but I am so used to coughing. It is something I have done on and off all my life, so unless it really gets in the way I ignore it or don’t think about it. It is just how I am.

I struggle with noticing, being aware of symptoms. I have improved on that front, and if I feel really ill I most certainly know, but may not specifically notice my breathing. So just now I really don’t know if I need anything extra or not. No one has said before I was really taking too much Symbicort. I am on 200/6. It will be interesting to see what happens. I have form on not noticing thus not asking for help and ending up in hospital in the end.

I was also prescribed a new peakflow. That followed one of the threads here that said to replace them annually, which I certainly have not done. The new one, an AirZone is a pretty blue, with primary colour ‘nobs’, and very small. I was surprised as I thought the miniWright was standard. It seems OK, though, but with slightly lower readings. Has anyone got experience of this one?

[twinkly29]

I am prescribed 3 puffs twice a day of 200/6 symbicort plus 2 puffs twice a day of pulmicort (the steroid bit of symbicort), so I'm on maximum inhaled steroid dose. This was consultant-prescribed but 4 puffs total a day isn't necessarily too much. I'd see what a doctor has to say.

[Lysistrata Administrator Community Ambassador]

I ended up on spiralling amounts of Symbicort and then on a complicated regimen of Symbicort and Pulmicort together. I actually found it hard to get the Symbicort in due to the force required, especially when getting worse. New consultant cut through all this ans changed the whole lot to Fostair Nexthaler (plus 3 other things).

I admit I'm not a great advertisement for any of these drugs - though I know I'd be worse off them - but if you don't do well on 2 puffs a day and 4 seems too much perhaps you could ask about alternative combination inhalers including the small particle ones (Nexthaler is one, also Qvar and Relvar) - meant to be effective at lower doses. Modern inhalers are meant to be easier to take and I do think it is easier than going up and down on Symbicort - again though I know I'm a freak! Worth asking about montelukast certainly if 2 puffs doesn't work.

Do you also get palpitations with the Symbicort? I did plus the shakes - much less with Nexthaler despite equal or more amounts of Ventolin so oddly enough may be the steroid element (Fostair Nexthaler has the same long-acting reliever but different steroid). May not apply to you but I was surprised by the improvement in this when I switched.

This is a bit rambling sorry...hope it's vaguely helpful!

[Wheezycat in reply to Lysistrata]

I am fine and lucky compared to many of you. This was less about needing more, and more about better ways to keep down inflammation than depending on so much steroid. As said I have never been told that before until the asthma U.K. nurse said so, about a month ago.

I am now going to experiment with two puffs daily to see what happens. If that proves insufficient, then it is how to improve on it, and that is where Montelukast has been suggested to me by Asthma UK, and today the by asthma nurse. It will be interesting, as I am rubbish at noticing my own problems. It has once (just once, want to keep it that way) escalated to the point of needing hospital because I was so crap at realising how bad it was getting.

Symbicort has really worked well for me. It gives me more cramp to which I am prone anyway, and I have sometimes wondered whether the extra steroids have made me dream more when I sleep, but nothing unpleasant at all. I also get intermittent thrush. Though it shouldn’t matter, I also like being on a medication that originates in Sweden, the country I grew up in. It feels safe to have something so familiar to them when I go there.

[Lysistrata Administrator Community Ambassador in reply to Wheezycat]

I did not know that about Symbicort! I did like it when I was on it, I just found I liked Nexthaler more lol. I hope the 2 puffs does do ok for you, but the fine particle inhalers are meant to cut down on steroid too so may be an option if it comes to that - montelukast I personally like but it seems to be great for some and useless for others! Of course there are other options - it can be very individual.

I believe there are considerations now about how to improve control without adding lots more steroid, especially now they are starting to work out that even without the side effects, more is not necessarily better for asthma control in some people! eg I have a theory that I have about as much steroid-responsive inflammation as Fostair can deal with and the rest is something that's not steroid-responsive so pred etc isn't going to do much.

I hope I'm making sense - my brain is mush for some reason - end of the week maybe.

[Wheezycat in reply to Lysistrata]

Thank you for that response. Yes, I will see what happens. Things may be better this winter......I know I worsened last winter with my four daily puffs. It improved greatly with warmer days.

I don’t know enough, either about options, or about myself. As for the options I haven’t really needed them, not before now. And maybe I won’t need them now either, though I have to admit I don’t think the two puffs daily is going to work.

For the first time ever I have today been given a document explaining Symbicort. I haven’t read it yet, but I will!

[Hidden]

Hi, I was also on Symbicort and for no good reason my GP changed it to Duoresp (which he said was the same as Symbicort but which wasn’t as good) and I was on 4 puffs am and 4 puffs pm which I believe is the maximum dose for any inhaled steroids. My consultant recently changed Relvar 184/22 which is only 1 puff daily & I am doing better on it. The only thing is as I have SREA my eosinophils have been running high lately and last one was almost 4.

The muscular cramps I had gotten used to with both the Symbicort and also Duoresp are a thing of the past as they could be very painful indeed, particularly in my legs and feet.

Am awaiting treatment with one of the biological therapies..either Mepolizumab or Resolizumab...keep wishing they would just hurry up and get on with it tbh.

How’s the new airflow? I need a new one as I’ve had it for ages. 🙈

Stay well 🌸🌺

[Wheezycat]

Yes, I have dreaded being put on Duoresp, having heard so much negativity about it, but so far no-one has suggested it. I have been on four puffs twice daily with Symbicort, for 3 months plus a couple of years ago, and since then whenever I get a cold and all that. It has helped, but generally not been enough. I would describe myself as a moderate non-allergic asthmatic, so I won’t have your problems.

My new peakflow meter seem OK, and seemsbe close to the measurements of my old one, but I have only used it twice so it is still on trial as it were. It certainly occupies much less space! Good for travel.

[Hidden]

New peak flow every year?!!! That’s a new one on me. I’ve actually got three Peak flows, one which is over twenty five years old, one which is over fifteen years old and one which is about three years old. They all come up with different readings for my ‘normal’ but those readings are no more than 50 apart, so pretty close really. They are also all consistent with their readings (both individually and in relation to each other) so I’m really not that convinced that I need another one. Nor have I ever been offered one. Granted, I don’t use them every day but having had asthma for over fifty years I generally know how my lungs are doing and certainly will always check if I go down with a cold or am beginning to feel a bit tight just to make sure.

[Wheezycat in reply to Hidden]

Yes, I am also unsure if it is really necessary, so I brought I up in my review yesterday. She seemed unconvinced, but not clear, and at the chemist they said it should be annually, but they, of course, would sell more that way. So I am no clearer.

Our daughter had one when young, which I kept, and when I needed one myself I tried it but that was clearly beyond use, so I bought one, and shortly after was given one in the hospital, so I had two. Both miniWrights, but measuring quite differently, so I have consistently used just one.

[EmmaF91 Community Ambassador in reply to Wheezycat]

It’s the rubber seal inside that you’re replacing, as it slowly degenerates and sticks. With this it can dramatically increase/decrease your score (the last time mine stuck I got 740, tried immediately after and got 380 (best 640). Was in hosp at the time, in front of docs and have to explain that it was a false read. 😅)

Plus we’re blowing our hot, yucky breathing into them at least 6 times a day (if you use it ‘properly’), more when we’re ill so is technically a germ breeding ground.

I don’t go from timing, I go from when it ‘sticks’ or if I’ve just got over a really nasty bacterial infection (I use it daily). I have about 4 dotted around the place so I don’t know how long they last, but I seem to pick one up every 6-12 months (usually stolen from a hosp visit 😅).

There is a bit of a variation between devices (not a lot) but it’s why we’re encouraged to stick to the same one for measurements, esp during flare ups.

I hope that helps explain things a bit x

[Hidden in reply to EmmaF91]

Six times a day!!! That’s another new one. When I was given my first peak flow meter (nearly thirty years ago) on the back of a hospital admission for pneumonia aggravated asthma I was told to check it three times a day - and there was a chart that came with the PFM that allowed for that. There has obviously been quite a change in thinking over those thirty years - or maybe it differs depending of the severity of your asthma

[Wheezycat in reply to Hidden]

I believe EmmaF91 has got severe asthma. I certainly never check that often, unless I am ill and it has significantly worsened.

[EmmaF91 Community Ambassador in reply to Wheezycat]

I meant 3 attempts twice a day therefore 6 goes a day 😂

[Hidden in reply to EmmaF91]

Ah yes - understood! Yes, I was told to do it before and after reliever inhalers - and still do that if my asthma is playing up.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I interpreted that as 3 times twice a day (because you're meant to do 3 blows each time) but Emma can confirm!

I do it about twice a day atm and more if I am feeling especially bad and want to see if it's responding - I use my fancy gadget though as I find FEV1 is more responsive for me, and I am trying to collect data for the clinic. I do have several Mini Wrights from hospital and find they read lower than the digital meter. Just looked at results the day I ha ds surprise bad attack and ended up admitted for 6 days ans wondering why I'm bothering - very little warning peak flow wise that day, somewhat more on symptoms.

I did once have a consultant (an asthma specialist supposedly) who told me I should do peak flow before taking reliever and not to take reliever if it was 'green'. Very practical I'm sure when I'm out and about... He also told me not to seek any medical advice unless peak flow was <50% best :o. I have tended to ignore this advice - my GP at the time was offering much better on both counts! It has made me s bit paranoid though at times about taking reliever.

[EmmaF91 Community Ambassador in reply to Lysistrata]

Exactly what I meant! 😂

I was told to pre and post salbutamol if I’m bad and to head in at 50% too. Tbh I only head in when at 30 cause otherwise I’d be in every other week 😅😬🤫

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

This cons meant 'not UNLESS it's below 50%, if it's above that you're fine'. And no reliever *unless* it's dropped, even if it's just normal daily use rather than heading to an attack - I do pre and post now if it's getting worse to see where I am, but wouldn't on a usual day when I need reliever. Basically, he wanted me to ignore my symptoms entirely and go on peak flow alone - I once got a 5 minute interrogation on why I didn't do my peak flow and why the paramedics 111 sent hadn't (I was stuck in my chair, couldn't talk properly and had no air coming out - the paramedics I think didn't feel it was top of their list!) This is how I know it wasn't just me mishearing what he said (ie what you get told which makes sense). He came very close once to telling me not to go to A&E at all but clearly realised it wouldn't look great for him if anything happened.

Relying heavily on peak flow doesn't work for me because it's a late sign and more about response to meds than a bare number in my case. I can be in resus with dodgy ABGs and still above 50% - it just won't be responding to anything! I think cons advice was pretty dangerous for anyone really - even if peak flow is normally reliable, he really did seem to think I should be ignoring other warning signs if it was ok. Not sure if it was just because he'd decided by this point that I was 'neurotic' (his word).

[Wheezycat in reply to Lysistrata]

As I have understood it - and along with what you are saying - is to pay attention to how you feel, your symptoms and PF, but absolutely not PF alone. But I am far less experienced as an asthmatic than you.

[Lysistrata Administrator Community Ambassador in reply to Wheezycat]

That's what Asthma UK and pretty much every official guidance says ie don't ignore warning symptoms because peak flow is ok. This guy messed with my head for ages because of things like this - he seemed to have decided I wasn't that bad and didn't ever need hospital (his response to my first two admissions, where I had been sent in by out of hours doctors, was 'if I had been there I would have come and chucked you out.' Was tempted to say well you weren't...)

[Wheezycat in reply to Lysistrata]

Oh, goodness! That is frightening, that such people are around!

[EmmaF91 Community Ambassador in reply to Lysistrata]

See thats quite amusing as I’m the opposite to you! I was told to do my PF more often and rely on it to judge what I do because I often don’t recognise my symptoms (I can feel ‘fine’ at 50% but be super wheezy and SoB to the docs. The nurses at the time said I had the opposite advise to what they usually give to severe asthmatics (ie trust your symptoms not your PF as it varies naturally anyway). If you recognise your symptoms it’s stupid to ignore it as that will lead to you not recognising them!

Funnily enough my a&e rarely asks for an initial PF now and will only do one after I’ve improved. I can usually ‘guess’ my PF quite accurately tho, or have my pre coming in PF that I’ll use.

I hate that cons will say everyone’s asthma is different but then treat us all the same 😤. I’m positively encouraged to go in even when I don’t feel like I need it! If your emergency medics think you’re bad then you were bad... it’s not up to another doc (even a consultant) who wasn’t there to comment that you aren’t bad!

I had one (cons at resp specialist hosp) tell me I only had mild asthma and was just anxious, took me off my meds and I struggled for 2 months until my next appt with someone else who went to meltdowns and admitted me for 5 days hydrocortisone therapy. The whole time I was there initially (difficult asthma protocol) I was saying ‘I’m currently well - my asthmas fine etc etc’ and was still told I was just anxious and blowing things out of proportion. The new doc wasn’t impressed (‘why didn’t they listen to your history? You obviously have severe asthma 🙄’) and the old doc apologised. I spent 2 months feeling like a fraud and not getting help as ‘it’s all in my head’. Luckily my GP and local were very supportive and not amused with that doc 😅

Sorry I feel like I’ve rambled full circle 😂

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

Having been to RBH I can make a good guess at which cons said what! I seem to have had a lot of cons like the first one (including, if I'm right, the same one who told you it was just anxiety - my.RBH one told me I just wasn't trying hard enough at physio and it was all my fault). Then another one at the same place as Prof.50% PF, who told me I had mild asthma and went to hospital for attention - to her all other drs who didn't agree were just incompetent and/or junior.

It has rather messed my head up to the point that I still constantly expect to be told it's all in my head and have enormous hang ups around trusting my own instincts and symptoms and telling medical staff when I'm struggling. The psychologist attached to my current clinic is attempting to undo all this so that I can actually talk to resp drs/specialist nurses without freezing like a rabbit in the headlights!

Oops sorry for the diversion off the original topic and rambling on about my neuroses!

[Wheezycat in reply to EmmaF91]

Though I am not severe, I recognise the non-recognising issue. That’s me. We get asked how often we use ventolin. For me that is useless. I do use it, but I would rarely, unless really bad (my kind of bad). I do use for excercise, but rarely otherwise. So the idea of ‘more than three times per week’ is no good as a measure for me. Recently I was unwell with a cold, and hesitated seeking help, but by the time I got there I had crackles and wheezes and the oximeter was at 93. And today a friend told me she can hear on the phone when I am unwell, something to do with the way I talk. She can’t hear it face to face. And lots of others have also commented one way or the other that I have looked ill/strained breathing/voice disappearing etc etc, when I haven’t necessarily noticed. Luckily my local GP service so far always take me seriously. Good to hear (I think) that there are others like me.

[Hidden in reply to Lysistrata]

My GP starts to get twitchy if my peak flow goes below 80% of what is normal for me. She would certainly expect me to at least call and ask for advice if it went down to that level. Hospital is another matter, but then my asthma is moderate and would be described as ‘well controlled’.

It is extremely rare for me to go below 50%. That has happened just once that I know of, but that was when I had the pneumonia and was also on a very low level of medication thanks to a respiratory consultant who thought my asthma was ‘mild’ (this was back in the 1980s when there wasn’t the level of testing there is now). As I was in my mid twenties at the time it didn’t occur to me to argue it. After that event he decided to increase the strength of my medication. I went down to 150 on that occasion (as a result of being put on a peak flow metre we later discovered that what was normal for me at that age was 425). I’ve never felt so sick in my life.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

On the occasions when I was told I shouldn't have gone to hospital, I had gone to 111 for advice after hours and they sent me to OOH GP who then sent me to A and E. The cons seemed to have trouble understanding the system (he had rather an air of not wanting to be bothered with the everyday details), so perhaps he hadn't taken that in ie that I hadn't headed there on my own, but it did seem at the time he was saying that I literally should do nothing unless the peak flow had dropped to that level.

I have met other drs etc who forget that just because a certain peak flow level is concerning, it doesn't mean asthma is not concerning if it is higher!

[EmmaF91 Community Ambassador in reply to Lysistrata]

I have the issue of a very high best PF, which likes to go bungee jumping. The worst for me is when docs say I’m having a panic attack or a mild asthma attack cause my PF is ‘good/ok’ compared to the average joe, when in actuality it was a severe/life-threatening attack. Some don’t comprehend that you go from personal best not national average! The lowest my PF has ever been is 160 which may be 50-60% for some but was 25% for me (I then rapidly went to silent chest if I wasn’t already... don’t remember much of that night tbh 😅)

My new GP is constantly sending me to a&e cause of symptoms and PF because he doesn’t know me yet. My old GP knew I’d eventually head in (or have a GP appt to kick me in 😅) when I knew I needed too. Ah the like of an uncontrolled severe asthmatic 😂.

I love my new local consultant(s). They really understand how everyone is different and respond appropriately. They know I know my condition well so defer to me for most things and are willing to argue out any discrepancies from what treatment/plan they expect to what I suggest. I really hope my new team I’ll end up with in norfolk will be as good! Dreading the fights I’ll get if their not!!!! I hate docs who don’t know me... they either panic or under treat 🙄. Other than the bad RBH experience I’ve never been told off for going to hosp - been told I can’t stay in overnight when I’ve needed to, been accused of not taking my meds etc etc but not told off for heading in in the first place! That’s disgusting and the opposite of what they should be saying... I’m always told better in when you don’t need to be, the out when you really do - it’s cheaper and quicker (and less paperwork) when we’re not too bad!

[Hidden in reply to EmmaF91]

I get so angry when reading of stories like yours. There is no excuse, absolutely no excuse for going on the National average for peak flow readings rather than personal best. I know such things happen, I’ve been the victim of a similar situation (not asthma related) when the national average was given priority over natural variation: my unborn second child was put at risk as a result.

All the doctor (or any medic) has to ask is “what is normal for you?” Five words; five words that a GP who had never seen me before immediately asked after taking a peak flow measurement from me. You would think someone in A&E would be trained to do the same with a life threatening medical condition.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I have a similar situation to Emma - best 630 when it should be 470 and mine come to think of it can follow a similar pattern unless it is getting especially bad when it doesn't budge. I usually have less problem with them using the best and more that they don't appreciate it doesn't drop as much as they expect with me, even in severe attacks. However, I did have a terrible time with one awful A and E dr who used my predicted even after being told my best several times, then tried to send me home when it was 380 and not budging with nebs - could barely move and she decided the PF thing meant I didn't need nebs rather than not responding to them - everything I told her/showed her with my summary went in one ear and out the other. She told me I was safe to go home but luckily her senior felt I should be able to talk and walk for that. Sadly the medical cons went off her assessment not his.

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

I basically got told by almost every cons until the current team that I was going without needing it (exception being an amazing cons at the same hospital as Prof 50% and the other awful one. He was so lovely and actually took it all very seriously - referred me to tertiary clinic aa he felt they could do more for me).

I used to be made to feel it was my fault that I went to hospital and my fault when pred was put up and it was all due to some kind of implied need for attention, because I couldn't possibly be bad enough to need to go that often or need the treatment I did. I have to say that with some exceptions A and E were mostly very good with me, but it meant I would often go to OOH first when I was really too bad for them just so they could make that decision. I was 100% convinced this last admission that the asthma team were going to have a go at me for being sent to HDU and how ridiculous it was and I should go home now, even though they're not like that here! I actually used to actively be terrified of seeing my resp cons when admitted for that reason.

Oops sorry to.ramble again Wheezycat! Emma I hope your new local is good - so frustrating when you get a good team and then lose them If you do get mepo locally though maybe it will give them a chance to get to know you better?

[Wheezycat in reply to Lysistrata]

Lysistrata, please do ramble!! I learn so much from you and EmmaF91 and others, including that I am lucky. Lucky I am not severe, and lucky that, so far, I could on the whole not ask for more from my surgery, nor from the hospital the one time I ended up there. No complaints from me, except the noise and chaos around me, as they left me in an admission unit for four days. Like Piccadilly Cicus it was. And you are all so supportive! It is so good to have this resource including some silliness every now and then.

[EmmaF91 Community Ambassador in reply to Lysistrata]

Oh that sounds so familiar! Stop responding to nebs so your good to go even if your PF is below 60 and you know it’s just gonna drop... that’s when I usually insist on a sit in til the 4hrs is up as I know I will drop further! I currently scare any junior doc when I present at a&e, mainly cause they’re such a good team. They give me the drugs I ask for (but may be a while as they’ll sometimes see how I respond to just nebs 🙄), and I’ll get good enough to go home (70%+, mild wheeze). I’ll then explain my history and habbit of dropping again within 4 hrs (esp if I’m still wheezy). They then freak and go speak to their superior before they agree on discharge. The sup will agree that I should probs be kept in atleast overnight for obs, the bed manager will say I’m currently not bad enough to stay, I’ll go home and return to repeat the situation the next day... then I get admitted for a few days and I’m good to go again 😂. (It’s almost like I’ve done this a few times 🤫🤣) The bed manager hasn’t learnt to just admit me when they first put my name forward 😅

Yes the ‘what’s normal for you?’ is a question not asked often enough in hospitals! I now have docs who assume because I’m severe/uncontrolled I ALWAYS have a wheeze 🤨. I then have the explain what when I’m well I’m brilliant so don’t send me home still wheezing cause ill just spiral again!

I know!!! 😫 Maybe I can just kidnap my fav docs and store them in my spare room 😏😆. That’s what I’m hoping... I’m my local and specialist hosp is the same they’ll hopefully get to know me well and I won’t have to keep explaining over and over!

[EmmaF91 Community Ambassador in reply to EmmaF91]

Ps sorry for changing your feed/post into the randomness that it’s become Wheezycat 😂

[Wheezycat in reply to EmmaF91]

Oh, please, Emma, don’t apologise!! As I said to Lysistrata, I learn loads from you people, and the forum as a whole, whether random or not! And it is good to hear about these things, I learn from that, too. Our are all so supportive!

[PaulRosedene]

You have a lot of replies ! I take 6 puffs of Symbicort 200 per day. I was told that 8 puffs per day is the maximum. I have tried to cut down to 4 puffs per day, but simply need the higher dosage.

I feel the peak flow is one indicator of the state of one's asthma. I have been recommended Montelukast a couple of times. For some reason I am reluctant to get onto another drug. so have resisted using it.

[Wheezycat in reply to PaulRosedene]

It has been suggested to me, too, and like you I am reluctant, and not convinced I need it. I have just started testing how I respond to just 2 puffs daily of my Symbicort 200/6(one am one pm). As I glide slowly into problems generally, it will take some days. I also tend to slowly recover, nothing instant, so when prescribed prednisolone I don’t get immediate relief, though it certainly helps. I can worsen very fast with a cold.