New here, asthma bad

I have been asthmatic for many years, my medication is salbutamol ""Ventolin (Blue inhaler) and Beclometasone Clenil Modulate 200mcg per puff one puff twice a day.

I have the worst attack I can ever remember and am still suffering, I had a virus infection over 6 weeks back and got over it in a week or so, my asthma was, as usual, bad. This time it has not got any better, I saw the doc a couple of weeks back and he gave me Prednisolone 5 x 5mg a day. I know this is a lowish dose but it made me ill, I felt sick, dizzy and I had nightmares at night, not nice! I stopped the 5 day course after 3 days. It made no detectable difference to my asthma anyway.

I had a phone consultation a couple of days back and the doc advised me to take two puffs of the brown inhaler twice a day, that makes a total of 800mcg a day.

Is that OK? sounds like a lot to me. It does seem to be working though :-)

Weston

PS usual newbie, join, ask questions straight away!

13 Replies

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  • Hello Weston

    Sorry your feeling poorly. It's crap!

    The nightmares are par for the course I'm afraid. Not always due to meds just you poor brain dealing with trauma of not being able to breath normally xxxxx

    The brown inhaler is the lowest dose ever!!!!!!!!!!!! Keep it up!!! Hope you feel better very soon xx

  • Dont worry - the great thing about inhaled steroids is that very little gets into your body generally as its so concentrated in your lungs (if it makes you feel better i nebulise 4mg (so 4000mcg) of beclamathasone a day and im still standing!!) It shouldn't have any noticable effect anywhere else in your body so all the nasty side effects you got on pred shouldnt occur! (obviously pred goes just generally into the body so gets everywhere which is great when your lungs are too closed up to get an inhaler in - but horrible the rest of the time! It will probably take a couple of weeks for the effects of the increased dose to take effect, but if you find that you are still not feeling great go back to GP then and they might need to step-up your treatment (possibly putting you on a long acting reliever). The vast majority of asthmatics do really really well on steroid inhalers, no or minimal side effects, and asthma very well controlled! FIngers crossed that that is the case for you!!

    It might be worth using a spacer to take your steroid inhaler (if you arent already doing so) and GP can prescrie these if you havent got one. It might also be worth making sure to rince out your mouth afterwards, as when you increase a dose you are more likely to get a sore mouth/sore throat if steroid residue remains in your mouth!!

    Hope you feel better soon!

  • Hello Weston

    Poor you. Yes 800mg of clenil modulate is fine I've been on that for a while now following a flare up. Think when you're having a flare up usual dosings seem to go out the window a bit. I.E I've been told to have 8 puffs of ventolin through a spacer every 4hrs for the next couple of weeks. Usually told not to exceed 8 puffs in a day.

    Persevere it should be worth it. Hope you feel better soon x

  • Thanks for your replies, I am reassured that my dosage of clenil modulate is normal. Yes I do use a spacer, and the doc has explained that it takes time for the increased dose to kick in. I also gargle after use or my voice goes high and squeaky!

    He (the doc) also tested my oxygen level (94%) which was normal and my blow capacity, 350 of some unit or another.

    I struggle mostly at night, I wake up every 2 hours or so for a coughing fit and a suck on the Ventolin inhaler.

    I didn't mention the anti histamines I take, the doc says it might help, well it helps my hay fever but doesn't do a lot for my asthma.

    I will go and see the asthma nurse next week, the doc is keen that I do, I do go to the asthma clinics as called in to do so, although I prefer to

    see the doc, than I am old school and it's to late to change now!

    Weston

  • I'm on 2 puffs twice a day on my brown inhaler too, I remember it seeming quite a big jump going to that dosage at first, but I settled into it pretty quickly.

    With regards to the hayfever, maybe the doc is treating it as a trigger for the asthma, but by the sounds of it the two conditions are not connected in your case, so I guess it just means sitting tight and hoping that the asthma nurse has an alternative suggestion. Good luck!

  • Thank you all for your input. I have to wait for a week before I can see nursie, unless it's an emergency then I can go straight away, hmmm.

    Anyway, things are getting back to normal by which I mean just the usual coughs and wheezes, still a bit ""tight"" at night sometimes but I can manage that.

    I will stay on the increased meds for now, although my throat is a bit sore even though I gargle well after inhaling.

    Having read a few posts I am aware that there are lots worse off then me and they have my full sympathy, so I won't moan any more :-)

    Weston

  • I thought I would upate and let you know how I got on at the Asthma Clinic. The nurse put me on Forstair in a nice pink plastic! After a week I can honestly say that it doesn't work for me. I take two puffs moring and two puffs at night. I don't think it is ""strong"" enough, my asthma started to get worse. So I have made a unilateral decision and added a puff of Clenil modulate morning and evening, that seems to work, no blue inhaler use at all and no coughing at night, Oh! bliss! :-)

    Question, is there any reason why I shouldn't do this? I am off on hols for a month and don't have time now for further visits to the docs. I will go and see nurse in a month and own up, but I can't see that it will be a problem? it's just a bit more steroid?

    Weston

  • Hi

    Depends how much in total you're having but you can have 800mg safely I know in a day as I was on that dose for ages. Ie 4 puffs morning 4 puffs night. You can get more dose per puff might be worth swapping to one of these less puffs equals filling fewer prescriptions!

    Glad you're feeling better have a nice holiday.

    I've now changed to symbicort wow what a difference!

    Only use my blue inhaler a couple of times a week now but I could have extra symbicort instead I find it brill

  • Forstair is what is called a combination inhaler, so it has a long acting reliever (works like blue inhaler but lasts about 12hrs) and a steroid component, (in your case the steroid component is the same one as was in clenil - beclamethasone), however the dose of beclamethasone is smaller, the idea being that the long acting reliever helps control symptoms so less steroid is needs. Fostair would usually be considered stronger, but clearly your body isn't a fan!

    Whilst in theory I cannot see any harm, as you are getting the same dose of steroid as you had been before, it's very important to be cautious in making changes without your doc. There is one particular inhaled steroid that can surpressing your adrenal glands, in that case (it's not beclamethasone) you can end up with what is called secondary adrenal insufficiency, which is a potentially life threatening condition. And whilst inhaled steroids are much better than the tablets - the more you inhale, he more gets I to your system and can act in the same was as the tablets would. It can also be a bit dodgey if you had two different steroid inhalers (both of yours are beclamethasone, but you can get other inhaled steroids). So it's not a decision to be taken lightly!! Lol!

    In terms of long term, I cannot for the life of me remember the maximum licences dose of fostair, I know whan i was on it I had up to 10 puffs a day, but that was under a consultant, and consultants can prescribe much higher doses that Gps! It might be worth discussing whether you can have a higher dose of the fostair, because then you'll also be getting the higher dose of the long acting reliever.

  • Thanks both, you know, when you get old like me, you tend to have a different approach to risk. The main consideration being "" will it shorten my life in any significnt way"".

    If I shorten my life by, say, 1 day in a year it might make a 10-15 day difference. If you are 30 years old it's a different story!

    Anyway, thanks for the info. The Fostair seems not to have enough inhaled steriod for me, I was told that as the stuff is much finer a lower dose has the same effect as a larger dose of something else, not so in my case. Sounds a bit like a salesmans seling ploy to me.

    I did ask nurse about Symbicort but was told Fostair is much better, strange that it is also cheaper.

    Anyway, I have found a combination that works, I think I will see my doc whjen I get back from hols, he has, in the past, given me pretty much what I have asked for, I am confident that he will let me have a trial of Symbicort.

    Now off to France, warm southern beach air should help a lot as I know from previous experience, maybe the red wine has something to do with it as well :-)

    Weston

  • well, personally i much prefer fostair to symbicort - i cant get a decent dose from turbohalers! And the particles in Fostair are much smaller - if there is significant airway inflammation this matters quite a lot! I noticed significant improvement when i first started Fostair, the severity of my asthma means that the smaller the better in terms of particles! Believe it or not, most doctors do have their patients best interests behind prescribing decisions! If they think there is significant airway inflammation then it would be a shame if they just gave you the symbicort - although i suspect they will - it's your life and its not worth their effort to make a huge battle! It does work quite well for a few people! Symbicort has the same long acting reliever as Fostair, but a different steroid, and so if you feel like the current steroid (the one in clenil and fostair) isnt working for you then there could be value in changing it! If nothing else - its been shown that knowing something is more expensive makes it more effective at treating symptoms - so might help my that!! (the more you think its gonna work the more improvement youre likely to see!)

    And, i'd hope that the quality of your life is also important?? In fact - if you consider yourself to not have that long left then i'd have thought quality of life is even more important?? Adrenal insufficiency isnt a bundle of giggles! It involves injections everytime you get ill and cant have tablets, or any major accident, and then daily steroids - that if you forget you'll get tachy, sick, abdo pain, headaches, dizziness, low BP, and electrolyte imbalances! I've thrown upmore since my adrenal glands gave up than i have in the ten years previously! Every morning when i wake up it feels like a hideous hangover coz there are no steroids in your system first thing. So, yes, im sure that the steroid dose as you're currently doing isnt gonna kill you, in fact, i dont even think its gonna damage your adrenals (usual not a doc disclaimer) but im just saying, ""a little bit more steroids"" can sometimes be a big life-changing thing!! So it isnt to be ignored! And risk-wise, in my life i take a load of risks, im on meds that could wreck my heart, but its necessary to keep me alive, so win some lose some, im pretty chilled about risk!

  • well, personally i much prefer fostair to symbicort - i cant get a decent dose from turbohalers! And the particles in Fostair are much smaller - if there is significant airway inflammation this matters quite a lot! I noticed significant improvement when i first started Fostair, the severity of my asthma means that the smaller the better in terms of particles! Believe it or not, most doctors do have their patients best interests behind prescribing decisions! If they think there is significant airway inflammation then it would be a shame if they just gave you the symbicort - although i suspect they will - it's your life and its not worth their effort to make a huge battle! It does work quite well for a few people! Symbicort has the same long acting reliever as Fostair, but a different steroid, and so if you feel like the current steroid (the one in clenil and fostair) isnt working for you then there could be value in changing it! If nothing else - its been shown that knowing something is more expensive makes it more effective at treating symptoms - so might help my that!! (the more you think its gonna work the more improvement youre likely to see!)

    And, i'd hope that the quality of your life is also important?? In fact - if you consider yourself to not have that long left then i'd have thought quality of life is even more important?? Adrenal insufficiency isnt a bundle of giggles! It involves injections everytime you get ill and cant have tablets, or any major accident, and then daily steroids - that if you forget you'll get tachy, sick, abdo pain, headaches, dizziness, low BP, and electrolyte imbalances! I've thrown upmore since my adrenal glands gave up than i have in the ten years previously! Every morning when i wake up it feels like a hideous hangover coz there are no steroids in your system first thing. So, yes, im sure that the steroid dose as you're currently doing isnt gonna kill you, in fact, i dont even think its gonna damage your adrenals (usual not a doc disclaimer) but im just saying, ""a little bit more steroids"" can sometimes be a big life-changing thing!! So it isnt to be ignored! And risk-wise, in my life i take a load of risks, im on meds that could wreck my heart, but its necessary to keep me alive, so win some lose some, im pretty chilled about risk!

    Thanks Soph, you are right about quality of life of course, maybe I should have said "" quality of life and lifespan"" or something like that.

    I am going to stick with the Fostair (and a puff of Clenil) as it seems to work for me, we are all different I suppose.

    I agree that ""Mr Placebo"" is an important part of any therapy, asthma included. If my dodc thinks something is not right for me he will say so, but if it's simply a choice then he will go along with it.

    I also have other issues, dibetes and high BP to start, I have my diabetes under control and I have my favourite insulins, I would be upset if the doc decided to change them!

    I have learned a great deal about diabetes and I am on a steep learning curve re: asthma. My asthma was controlled for many years with just a Ventolin inhaler now and then. Maybe age plays a part but it has got steadily worse over the last 5 years.

    As you probabably know steriods and diabetes do not go together well, the inhaled steriods do not seem to make much difference to my blood glucose, the Pred tablets do.

    Weston

  • Yeah, inhaled steroids are much nicer in terms of side effects than the tablets, so they'd always much rather inhaled than oral if poss. I have 4mg of budesonide a day nebulised! Lol!

    And very much know the issue with managing multiple conditions, I have a nightmare with all my heart drugs and all my asthma drugs all messing about and making things a load more complicated!! I've had resp and cardio consultant actually shouti at each other!! It was funny!

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