Problems

Hi

I was diagnosed 12 years ago with asthma and have gone through many treatments and the more I take the worse I get.

After getting pleurisy several years ago and being on seretide and prednisole for 18 months I found that I couldn't even get up a standard flight of stairs without stopping a couple of times. I had put on a hell of a lot of weight and the drugs I was taking affect my mental state as well - I would sit and cry - couldn't hold an intelligent conversation at times because my braiin felt 'fried'

Plus the more I took the less my immune system worked so the more infections I got and the more drugs I was offered to treat it

After a lot of research I went to my doctor and told him I needed to come off these drugs - the seretide (even though mild doseage) had to be done over a period of three months - something to do with your adrenal gland function - and I went through a couple of weeks of absolute hell with withdrawl symptoms.

Over the past few years I have lost over 5 stone - still more to go to get back to where I was.

I still keep the seretide inhaler for when I have a bad cold or congestion but the only medication from the doctor I take is ventolin.

I have learnt to control my asthma - I know what triggers it to a certain extent and I know not to get too warm (any kind of heat seems to trigger it - even a hot bath)

I take a booster course of echinacea/golden seal and cats claw for three months at the beginning of every winter for my immune system. I take magnesium tablets to help with the congestion, have eucalyptus oil (not menthol as this really gets to my chest) and have a humindifier in my bedroom for when I am bad.

We have ionisers in all rooms and my husband has converted our shower into a steam room which works amazingly well.

My current problem is that - although I have peak flow around the 500 mark, I go canoeing, hiking, mountain biking, camping and I walk to work - I do still take quite a lot of ventolin - which my doctor is OK with

However, the practice asthma nurse is one who believes that your asthma isn't under control without a preventer. So every six months I have all out war with the practice to get my prescription because she threatens to withdraw or restrict my ventolin if I don't take some form of steroid preventer.

My arguement is that I am managing on 2 inhalers a month and I take the seretide when an attack is coming on - usually this works. If I take this inhaler all the time then when I am ill I have to take prednisole (I put on half a stone in a week - apart from the usual side effects like turning your insides to soup) and if I take this inhaler - eventually I get used to it but I have to continue with this and then take another one - and you start on that nasty downward spiral again.

Apart from being a violation of my human rights - how can a medical practitioner justify forcing someone to take more drugs when they manage on the bare minimum.

Does anyone else have this kind of problem with their quack

9 Replies

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  • Loobyloo, I am sorry you have been having a such a time of it. However the needing to ween off seretide (inhaler) slowly because of effecting your adreanals sounds like nonsense, no wonder you are bemused and confused it seems your Dr is too. High dose prednisalone or pred tablets as we say here does need to be weened off but I have never heard of an inhaler taken at normal or small doses affecting your adreanal system. The drug is inhaled and absorbed into the lungs, which is why you don't get all the nasty side effects, weight gain, stomache problems and adreanals being knocked sideways!

    I would have thought that 2 ventolin inhalers a month would merit a go try at preventers for a while. The effect of a seretide is cumalitive so just taking it if you feel an attack coming on would not give you the full benefit.

    I would have thought bearing this in mind (I am sure the dr's on this site will be along shortly to reassure about seretide) it would not hurt to give it a go and see if taking seretide everyday for a month reduces your reliance on ventolin.

    Bex

  • Hi loobyloo,

    I can totally sympathise with the ever increasing amount of meds situation. I too usually just stick to ventolin and go through a fair amount but my gp is used to it. One option may be to just see your gp and not the asthma nurse.

    One point though is that you are quite right in the need for caution in coming off seretide too fast as it can affect your adrenal glands. ""Systemic effects may occur with any inhaled corticosteroid, particularly at high doses prescribed for long periods. These effects are much less likely to occur than with oral corticosteroids. Possible systemic effects include ... adrenal suppression...

  • According to the BNF high doses over a long period of time have the potential to induce adreanal suppression, however if you are on doses high enough to do that you will be given a steriod card. There is nothing to fear from a normal dose of seretide. I have been looking at cases of adreanal suppression when using seretide, I could not find anything, I guess there must be some out there, there was one vague reference but the person was on a high dose and was mistakenly over-dosing too. Please don't stop taking your seretide inhaler if you think your dose might be high enough to cause a problem ask your GP.

    There are dangers associated with ventolin too. It is balancing act.

    Loobyloo, did you just stop your prednisol or did you ween off that too?

    Bex

  • Hi Loobyloo, I can sympathise with your wish not to be on many drugs. Ventolin has got its problems too though, and overreliance on this has been linked to asthma deaths, so there are good reasons to consider preventative treatment. Seretide in normal doses shouldn't cause adrenal suppression in adults, however prednisolone will do.

    As has been suggested, I would speak to your GP rather than the nurse- nurses tend to be quite protocol based in these situations and the GP may well see the bigger picture better.

    Hope you get to a satisfactory solution.

    S

  • Hey

    Some people are on about ""normal"" ""low"" and ""high"" dose seretide: what sort of dosage would you put into these classifications?

    Ta, Emz x

  • Hi Loobylou,

    Sorry to hear you are having these problems, it is not pleasant when one does not have a good relationship with ones healthcare providers!

    I would just echo what others have already said, really - whilst prednisolone does produce many of the symptoms you describe, Seretide really shouldn't produce much in the way of side effects at all, especially at low doses. There is really very very little systemic (body-wide) absorption of fluticasone, the steroid component of the inhaler, so things like adrenal suppression and immune system problems shouldn't really be an issue (it is true that there have been a few recorded cases of adrenal suppression with extremely high doses of inhaled fluticasone, particularly in children, but this is extremely rare).

    As Owl has pointed out, over-use of inhaled beta agonists such as salbutamol on their own without any preventer has been associated with an increased risk of asthma death, so your practice nurse is making her recommendations for very good reasons. Her recommendations are based on the British Thoracic Society / Scottish Intercollegiate Guidelines Network Guidelines for the management of asthma (you can see them here: brit-thoracic.org.uk/Guidel... - copy and paste into your address bar then delete any spaces the forum software has put in!). This is a highly evidence based set of guidelines suggesting best practice in the management of asthma, based on the review of hundreds of studies.

    Of course, you have a right to decide what drugs you take or don't take - no-one can force you to use medication you don't want to use. Equally, though, a prescribing clinician has a right and a responsibility to make appropriate prescribing decisions based on what is known about the safest and most effective way to treat conditions. It may well be worth seeing your doctor again to discuss your feelings about using Seretide, and to see if you can come to a mutually satisfactory agreement about the way forward. Personally, I would strongly suggest giving Seretide or some other form of preventer another try; however, that is for you and your doctor to decide. Whatever the outcome of your discussion, it's worth making sure your doctor has documented it with crystal clarity in your notes, so that you don't have to repeat the whole conversation every six months with your practice nurse.

    All the best with coming to a solution for this problem

    Em H

  • I am not an expert, but isnt it possible to take a long acting beta agonist such as servent? its a non steroid inhaler. But im not sure if you have to take it along with a steroid inhaler?

  • Again, Haagendaz, there is good evidence to suggest that taking a long acting beta 2 agonist such as salmeterol on its own, without a steroid inhaler, increases the risk of death from asthma.

    I am in a bit of a rush now, but can produce the references if anyone is interested. For starters, see the CHM advice on using long acting beta 2 agonists (LABAs) in the BNF: bnf.org/bnf/bnf/53/2878.htm

    (requires registration to view, but is free and only takes a few minutes)

    That is why the BTS/SIGN guidelines are as they are, with introduction of a LABA placed firmly after introduction of inhaled steroids. They are pretty evidence based guidelines.

    Hope this helps,

    Em H

  • hi,

    if seretide not working for you why dont you try some of the other inhaled steroids, such as betamethasone, or pulmicort, if you feel the long acting beta 2 part helps you can have symbicort, again i -2 puffs a day may give better control and as the long acting in symbicort (oxis) works in a couple of mins you feel it having effect like your salbutamol but giving you some inhaled steroid as well, it is very well tollereated.

    hope this does not confuse you, remember there are always alternatives,

    george x

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