Seretide 'step-down'

[GregGreg]

Has anyone else been advised to change from Seretide to another med? Although this is the only med that has been effective for me, at my last review I was told it's going to be changed soon. They have already stepped me down from a 250 evohaler to 125 causing me to need my Ventolin daily again. Any similar experiences would be appreciated.

[Hidden]

Greg, if you are needing to take ventolin on a daily basis you need to go back to your GP. Taking ventolin that frequently is a sign that your asthma is not controlled.

[GregGreg in reply to Hidden]

Thank you for the reply Maggie. I had an asthma review yesterday and explained the situation. I requested a prescription for Seretide 250 but was told I couldn't have it as there were more cost effective alternatives. I felt like she was just trying to talk me into taking a different inhaler, with several suggested, but it all came as a bit of a surprise as I was expecting to go back to what had worked for me previously so I declined and said I wanted to think about it. I got a prescription for Seretide 125 but she said this wouldn't be available for much longer.

[Hidden in reply to GregGreg]

I went through something similar, but it wasn’t because I was on Seretide. I’m actually on flixotide 250, same steroid component as seretide but without the serevent. In my case it was initially suggested that I switch to Fostair by a consultant, but I refused point blank because in the past I have had bad experiences whilst on beclometasone (the steroid used in Fostair). Some time later one of the local GPs recommended that I try Budesonide. It was at this time of year so I argued, successfully, that trying me on something new when I was much more likely to have an asthma flare because of the time of year (as with most asthmatics my asthma is worse in the winter) was not a clever idea. The GP agreed and that was the last I heard of it. I’m still on the flixotide.

To be fair, I wasn’t being taken off the Flixotide due to cost, but because another consultant in a different speciality was concerned that it might have been partly responsible for another medical condition (which we’re now fairly certain it wasn’t). But even so, getting someone (who is stable and controlled on one medication) to switch medication for a non medical reason at a time of year when most asthmatics are more likely to have problems anyway is not clever.

[GregGreg in reply to Hidden]

I understand what you mean Maggie! I was prescribed Becotide (beclometasone) for 20 years before anybody realised that it wasn't doing anything. I then went through a few different trials including Serevent and Flixotide but wasn't proscribed Seretide until I had the worst attack I'd ever had and it was a revolation! For the first time in my life I went from taking my reliever 20+ times a day to not even being able to remember the last time I took it! My mistake was telling my asthma nurse this and giving her the reason to reduce my dose. I didn't know at the time I could say no to this.

[elanaoali]

HI GregGreg It is interested in that people have to switch to a cheaper inhaler because of cost. It sounds from the posts that Seretide is probably going to stop being made.

I have taken Seretide for 2 years til November last year. I had been offered better and quicker working inhalers and I tried one once and it didn't work for me. So I switch back to Seretide and I had got not argument from my asthma nurse. I was told it was more expensive but never was I pressured to change to due cost.

So I have found it very surprises that people are mention that they are being given no choice but to switch.

I had a bad patch with my asthma in October-December starting with a flare up extra steroid inhaler Flostair 250 as well as the seretide. I was then put on a course of steroids but this didn't stop me having two asthma attacks in two days. So was upgraded to consultant care.

In the meantime I was asked if I wanted to try Flostair Nexthaler 100 instead of Seretide as it had smaller particles and I could get on better with it. Tried it and I stayed symptom free. So I been on it since beginning of December.

Where you step down because your asthma was controlled for 12 weeks and that's why you would have been stepped down. Otherwise I can't see the logic behind this decision as you said you having to use your Ventolin often. Golden rule on your asthma plan if you use it more than 3 times a week go back to your Doctors. Your asthma is not well controlled.asthma.org.uk/advice/manage...

I would ring asthma UK helpline 0300 222 5800 MON-FRI 9 am - 5 pm and explain the situation and they will give you gold standard advice. When I not been feeling very brave and didn't want to make a fuss. They gave me the information to help me talk to my doctors and stand my ground. I got what I needed. I think this is what you need from the information you have given on this post.

I hope this helps.

[GregGreg in reply to elanaoali]

Thank you for the reply elanaoali. Sorry to hear about your attacks but glad you have found a solution. I did speak to the helpline this morning and was given good advice including that Seretide has NOT been withdrawn! I have since emailed my surgery with a formal request for the medication I want and the reasons I want it. We shall see what happens!

[Minushabens]

As others are alluding to, there are distinct issues here. I was changed some time ago from Seretide to a different set of inhalers, which didn’t really change my symptoms one way or another, so I was ok with it. But, setting aside the issue of cost, they shouldn’t be ‘stepping down’ anything without a clear medical need. That’s not preparing you for anything other than a deterioration. If they want you in a different inhaler, they owe it to you to explain what & why. It can be scary to move when you’ve done ok on something, but it might work out for you. But change surely needs to be immediate?

[GregGreg in reply to Minushabens]

Thanks for the reply. I found a copy of the asthma inhaler guide lines and step down chart issued by my local heath authority which state on it to tell patients that the changes are being made to prevent possible future issues caused by long term use of certain inhalers but each step-down or replacement interestingly has the price of the medication next to it! All step downs and suggested alternatives are, of course, cheaper. This together with my asthma nurse actually telling me that it was a cost issue make the reason for there policy of changing inhalers obvious I think. It's so distressing as Seretide 250 is the only inhaler that has ever made me feel 'normal' so to speak. I didn't have to always know where my reliever was and that I had enough and a spare just in case.... Feel like I'm back to square one almost.

[elanaoali]

I think just because this is the new policy is wrong. If a patient has good control of their asthma on this inhaler then isn't this in the best interest of the NHS to keep you well. If you were to get unwell you certainly will cost the NHS more money. I don't know what trips to A &E cost but I sure they cost the nhs lots more than a more expensive inhaler.

I would still ring asthma uk helpline with your story and tell them what is happening to you. They will help you to state your case. Just bases someones care on cost not what asthmatic needed they don't need people to say you cost us too much money. They need to know that this could make you very ill or endanger your life. The NHS is human don't think you don't matter and you have expect it.

If as they say its also down to future issues caused by long term use of certain inhaler (was yours mention) Then you have the right to know what these are and should already know this. I never had a GP or asthma nurse tell me that seretide is bad for my health. The only reason is would be concern is that on a high dose and added in with extra steroid inhaler Flixotide and having two asthma attack in three days and being on predinsolone at the time has made me move up to consultant care.

So as I said at the beginning fight your corner ring up asthma uk and then will help you. If you can't have this medication from you local nhs because of cost then tell that you need it to stay well. When you talked to asthma uk they will know everything that you can do.

What I saying don't give up!

[Mycinnie]

My hus and was on seritide and it was great but nurse changed to fostairas said less risk of pneumonia

[Hidden in reply to Mycinnie]

I’d love to see the scientific evidence that proves this ‘risk of pneumonia’ apparently associated with seretide. As someone who developed pneumonia as a secondary infection when my asthma was not fully controlled by the medication I was on (becotide), I’m all too well aware of the risks associated with being on medication that is not effective at controlling asthma symptoms. It’s the main reason why I fight any suggestion that I should come off flixotide 250.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I'm sure I saw something about pneumonia risk with inhaled steroids but I'm pretty sure it was in COPD not asthma. I assume they are taking a blanket approach but it doesn't really work like that - COPD is not asthma and the risks are not the same especially as the effect on the lungs in COPD might be more expected to cause infection problems. As you say MaggieHP, there are also plenty of known risks with taking an asthmatic off something that controls them and replacing with something that doesn't! One size does not fit all with inhalers.

[GregGreg in reply to Mycinnie]

Thanks for the message Mycinnie. How long ago was the change made and how has it gone for him? Fostair isn't an option for me as I don't get on with beclometasone but seems to be the popular choice for the medical profession. It is the cheapest as far as I can see so this may be why.

[MMBJI]

Hi Greg, I also was asked to change from Seretidede (250, 2 puffs 2x daily.) I wasn’t happy as after years of struggling with various steroid/long acting reliever combinations Seretide 250 had been a real revelation. I was told that there were links between type 2 diabetes and long term use of high dose Seretide (which I was.) I didn’t agree to the change as I didn’t want to risk having an exacerbation at that time (home full time with pre-school twins and a teenager who has autism.) I then felt I was choosing between diabetes and asthma........ Anyway, after a couple more asthma reviews I agreed to give Symbicort a try (during the holidays when the twins were a bit older and I didn’t have school to contend with.) It was awful for two weeks and I used a whole inhaler during that time, but then my symptoms settled down and I feel just as well controlled,if not better than when I was taking .Seretide.

Good luck!

[Hidden in reply to MMBJI]

A link with type 2 diabetes! That’s a new one, and it’s another one I would like to see the scientific evidence for:-).

I’ve been on flixotide 250 for years which uses the same steroid as seretide but doesn’t have the salmeterol. Last time I discussed type 2 diabetes with my GP (my father was diagnosed with it when he was in his late eighties) I was told that taking everything into consideration she reckoned (though obviously she couldn’t state anything with certainty) that I had at most a 5% risk of developing type 2 - and she was well aware of what asthma medication I was on.

[Anniecath]

Hi GregGreg,

really sorry to hear about your troubles. It is very distressing to read all these posts about asthma patients being forced,coerced,bullied (use whichever one of these words) into changing their medication when what they are already taking keeps the disease under control. It costs more to treat someone who has had an asthma attack than it does to keep them on an even keel, therefore it is a false economy to try and cut costs by switching medication. I have experienced this and as a result changed to another surgery. I had to fight really hard to be put back on my original medication. One size does not fit all.

Last week I had my annual review with a younger nurse. She asked did I want to change my medication. I said I am 63 and it has taken approx. half my life to find a regime that worked for me. She said thats fine then, stay on that track. I asked her for a favour, could I switch my annual review to mid summer, instead of mid winter as I didn't relish coming into a surgery at the height of the flu season. I don't take the flu jab because it triggered arthritis. Again that was fine. For the first time in 7 years I felt I was being listened to. Previously older nurses had been pressuring me to change my medication. It makes a nonsense of the stated partnership between doctor or nurse and patient. You cannot have a grown up conversation about what medication to take if you are not given all the facts. Please stick to your guns and don't back down. If necessary put it in writing and emphasise that asthma is a life threatening illness and that it is in everyones interest (especially yours) to keep the disease under control. I wish you all the best.

[WhiteFalcon2017]

I was on Seretide and got changed to Fostair. I must admit I have found it helpful.

When I get my inhalers I always get two so when I was dropped from Seretide 250 to 125 I was given just the one. When I asked for another I was told, and I quote "They cost £45 each and we don't want to waste NHS money do we?". I must admit I was a bit shocked when he told me that.

Shortly after that I went to see the asthma nurse for my review and I told her what he had said after she got a bit miffed because I told her I'd done an asthma survey and was told I was receiving substandard care.

So yes, I do think we get the not so expensive medications.

[WhiteFalcon2017]

Sorry, forgot to say I get one Fostair inhaler. That sounds like I'm complaining but I'm not.

[GregGreg in reply to WhiteFalcon2017]

Thanks for the reply WhiteFalcon2017. I'm glad Fostair is working out for you. I just had a reply back from my surgery after taking the issue up with the practice manager and was told my request for Seretide 250 has been declined and thay he 'supports the opinion of the experienced asthma nurse' which did make me chuckle as that same nurse told me, when I gave me reason for declining Fostair, that Becotide (that had never worked for me) and beclometasone were completely different... I told her no, they are exactly the same, Becotide was merely the brand name it was commonly known as. I don't see any choice but to move surgery now to be honest as they have obviously closed ranks.

[WhiteFalcon2017 in reply to GregGreg]

Thanks for getting to me Greg. I hope you find another surgery with more understanding staff. I wish you well with the search.

The asthma nurse at mine left and now we have nurses that cover asthma although I'm not sure what they might know about it.

Take care.

[Lysistrata Administrator Community Ambassador]

Even if you don't think good care matters, these 'cost-saving exercises' seem ridiculous! If you are going to keep taking the same inhaler, how does it save money to have one at a time? It's as though they're assuming that you won't bother taking it. If you actually weren't going to, they should be addressing that or, guess what, it'll end up costing them a lot more in A&E trips. The best reason I could think of for having one at a time is for a trial period - that would make sense, but not if they aren't actually planning to let you switch if it doesn't work.

It seems as though no one ever reminds them of the financial cost of uncontrolled asthma, never mind the human side. Greg, I hope you find a better surgery soon as that's pretty shocking. I believe the training in asthma is not necessarily required for GP surgeries so they do sometimes just assign someone to do it without ever training them properly.

[GregGreg in reply to Lysistrata]

I'm not averse to trying another medication and like most of us I'm sure, I don't want to be taking any more than I actually need. Having said that, trying something new at a time when my condition isn't under control scares the life out of me. Especially when I know that what I'm being steered towards doesn't work for me. I've identified a local surgery that has an asthma clinic so fingers crossed they accept me as a patient and if so, give better care.

[Lysistrata Administrator Community Ambassador in reply to GregGreg]

I'd feel the same - there is a big difference between a healthcare professional saying that they think you should try something because they think it's a better option, and forcing you onto something to save a few quid. And if it doesn't work for you, they should be willing to listen!

Not quite the same but I had two different consultants want to take me off one of my medications. The first one, who consistently treated me like a silly child who was incapable of understanding anything to do with medication (I was 29, but a 9 year old would have felt patronised by her), stopped montelukast basically because she had decided I took too many medications. I had asked for an asthma plan repeatedly, so she told me that I couldn't have one unless I tried to reduce my medications because at the moment I was 'on everything'. I got worse - possibly a coincidence I now know - and the specialist asthma nurse decided to reintroduce it and add another medication too.

A couple of years later my current consultant went for the montelukast again. Obviously I was pretty wary this time, but he said he personally did not mind how many medications I took if they all worked for me, he just didn't have much opinion of this one and especially not for someone like me with non-allergic asthma. I feel he was a bit harsh on montelukast overall, as I am sure it does great things for some people if not for everyone. However, because he actually explained his thinking and it made sense, I was therefore much happier to give it a go and seem not to have got worse without it.

Obviously that wasn't a finance thing, more a doctor thing, but just to say I completely get where you're coming from about good vs bad medication changes. I really hope that your new surgery accepts you and listens properly.