Worsening asthma since taking Fostair... - Asthma UK communi...

Asthma UK community forum
13,408 members18,957 posts

Worsening asthma since taking Fostair, despite peak flow etc. looking fine

Shell8124
Shell8124
17 Replies

I have been on Seretide 250 until fairly recently, and my asthma has been the best it has ever been, only needing to take Ventolin about once every 6 months. Since taking Fostair my asthma seems to have got gradually worse, and I am now taking Ventolin most days. I have spoken to doctors about this and got nowhere. This week i have had the biggest flare up I've had since I was about 5 years old (I'm 32 now). It peaked on Tuesday and I had to see a doctor whilst on holiday in Cornwall. I felt like someone was sitting on my chest, and couldn't walk up a flight of stairs without needing to sit down. The doctor got me to do peak flow, oxygen levels, and spirometer; All of which showed I have the lungs of a 20 year old. I felt so frustrated and a bit like a fraud! After reading topics on here it is really reassuring to know that I'm not the only one who had a perfectly fine peak flow etc. despite feeling poorly. The doctor thought I might have a heart condition as my lungs looked fine, so I got sent to A&E. 5 hours, an ECG, blood tests, and and an x-ray later, I felt like I had wasted everyone's time, and got sent home with Prednisolone (which has helped massively).

My question is, is there any hope of getting my inhaler switched back? Especially as all of the tests show that my asthma is really well controlled? I am a very active person, and am struggling at my usual fitness classes even on good days. Feeling pretty fed up at the minute.

17 Replies
oldestnewest
Lysistrata

Hi!

You have my sympathies. That sounds horrible - bad enough feeling bad without the lack of anything to 'prove' it meaning you don't get the help you need. I have been there a lot - I'm sure there is some concrete marker, but probably not a standard one or one we know how to measure. The 'problem' with being well controlled if you aren't textbook is I guess that you don't get the chance to learn what your personal markers are when something like this happens, though in an ideal world you wouldn't need to!

I think the really big thing that a doctor *ought* to pay attention to is the massive increase in Ventolin use. The official guidelines etc are pretty clear that any more than 3x/week is poor control. Every 6 months to daily is a MASSIVE increase that any doctor should see as a red flag, and the timing definitely suggests the inhaler switch was not a good move for you. I would definitely emphasise that to your GP - though it may take more than one try depending on how open-minded and up on asthma they are.

Also, when you say your peak flow was fine, was it fine by *your* usual standards, or were they using predicted? You've obviously had asthma for a long time, but if it's been that well controlled you might not know your recent personal best. Did you have a recent-ish asthma review when you were well where it might be recorded? I'm asking because although my peak flow in general is a useless measure, my predicted best is also in the yellow zone when you consider my actual personal best, which is wayyy over predicted. I don't hit it often but I do still use it as my benchmark. Maybe that's the same for you.

I also find that measuring how it reacts to the Ventolin is more use - if it doesn't budge, or drops back quickly, that's maybe something else you could take to your GP. You could also ask for reversibility testing, as the same may be true for your spirometry measurements - you might just have better than average best measurements which aren't showing up as you have no comparison. If they get a lot better post-Ventolin, it suggests you have room for improvement, even if they seem ok with one reading.

I'd say you could also point out how much the pred helped - A&E presumably did actually think it was asthma or they probably wouldn't have given it to you. I've had several 'textbook' types who refused it becuase my numbers seemed ok despite me being a severe asthmatic having an attack. Remember that when you feel like a timewaster (I've been there).

I hope this helps - sorry it's so long but I can really sympathise as someone who is just a bit weird in how they present. I hope you find a GP who listens first try, but if not do keep going and don't feel like a time waster - you do actually have official opinion on your side, just not what drs always think of for asthma. I can see why the heart was a concern and it was sensible for them to check that, but it seems that was not the issue so now they need to focus on what is going on with the asthma.

Maybe also give the helpline a call - they may have other/better suggestions on how to tackle your GP. I have always found them very practical about the realities of these things.

2 likes
Reply
Shell8124

Thank you so much for taking the time to reply with your advice. I will try all of the things you have suggested. I am more determined now as I never want to feel like I did this week again.

I have an appointment with the asthma nurse today, that I booked before this episode, but I will mention all these things to her as she actually listens to me. I can also ask about my peak flow there, as i don't really know what my best usually is. It has gone up from 440 to 480 since Tuesday but I'm not sure how significant that is.

I can't imagine how you must feel to be refused pred, knowing it would help. I dread to think how I would be feeling today if that had happened.

Also never even thought of the helpline, I will bear that in mind. Thank you again for the reassurance, it was much needed.

1 like
Reply
Lysistrata

Good luck! Glad it was useful, and hope it goes well with the asthma nurse - always good to have someone who listens! The helpline are amazing - the nurses are mostly specialist respiratory nurses and usually really good at making you not feel like a freak and suggesting options.

I did roll my eyes reading your post below about your surgery trying to save costs. Are they aware of the cost of an A and E trip, or an admission?! Quite apart from it being terrible care, poorly controlled asthma probably ends up costing more than the savings they make!

1 like
Reply
Shell8124

Yes I agree it must cost so much more. I wonder how much the cost of Ventolin compares, when you are using it every day.

Going back to what you were saying about not getting the Pred, the doctor at the surgery said he would have sent me home and told me to see my own gp at the end of the week if my ECG was normal. Don't think he had any intention of giving me Pred!

Reply
Lysistrata

Ha, no, bet he didn't. A&E can sometimes be a bit more practically minded I find. Not always and people including me have had bad experiences, but often they tend to look at someone struggling more than how they *should* be presenting. Or it can be pot luck getting a dr who thinks that way.

I saw below the nurse put you on Flutiform - never used it but I do know some people who like it after Seretide. Crossed fingers that plus montelukast works!

PS re the Ventolin, it's not that expensive so that probably isn't the major cost, but otherwise uncontrolled asthma does cost more! I mean now you're on a newer and probably more expensive inhaler plus montelukast where they could have left well alone!

1 like
Reply
Lisacharman

I sympathise with you I had been on symbicort for years I was fine and needed ventoline rarely mainly when I had a cold but went for asthma check up and suddenly I was told there was a new inhaler out it is the best thing I got put on flutiform which made me have severe oral thrush I was changed to fostair and I didn’t get on with it used my ventoline on a daily basis I asked my consultant team why my gp had changed to this and I got told because it is cheaper this is why they are changing as many patients as possible I am now after 2 yrs back on my symbicort asthma is slightly better not using ventoline as much but I have brittle asthma and have been on cpap machine twice in intensive care so to me messing around with my treatment was the worst thing and it wasn’t because it was great new medicine it was because it was half the price of symbicort so I fear this might be the similar situation and yes I have symptoms I had a 4 day long asthma attack in September but because me peakflow was down but not really low so they did nothing for 4 days then I saw a different doctor he sent me up to the emergency ward at my local hospital they did loads of tests and my blood gases were low I had a raised white count and an infection and so I came home with stronger steroids nebuliser and antibiotics to kill the infection but my peak flow was only 50 points lower my normal peak flow is 420 and it had dropped to 300 by the time the 4th day was here you have my sympathies keep going and stick your ground xx

2 likes
Reply
Shell8124

I asked my doctor months ago if I could be changed back to seretide, and first time got refused and told the surgery has been told to use fostair and don't have the power to change it. Second doctor showed me a screen with prices of each inhaler on, showing that fostair was way cheaper than seretide 250. He changed me to Seretide 500 accuhaler powder which didn't agree with me at all, so I ended up back on fostair.

Sorry that you are having such a hard time after being messed around unnecessarily. I hope you feel better soon on the Symbicort.

I will definitely stick my ground, this week has frightened me as I've never been like this before, and never want to again.

1 like
Reply
Lisacharman

I think you have to stick your ground I have just this minute had a cal from my surgery to say the gp has now stopped another of my medications for something different to asthma which I was again put on by a consultant so I replied well it is the consultant who put me on this so I feel it is down to him to stop it not the general practitioner if this is the case that a gp can do what they want with us stuck in the middle why have consultants anymore if gps seem to think they can mess with the health of humans due to cost of items none of us asked to be ill in anyway we just want to carry on with our normal lives as best we can xx

1 like
Reply
Hidden
Hidden

Hi

I was on Fostair then went on Seretide!!Fostair is weaker do you have to take more..the mart programme 8 times a day..honestly it costs them more because you run out faster..

So the opposite..then they went generic and I got a letter from the surgery swapping for a cheaper product can’t remember the name, well it was useless and didn’t fit in my aerochamber..

So fight your corner is what I say..

Good luck x

2 likes
Reply
Shell8124
Shell8124
in reply to Hidden

I am on Fostair 200/6 and take 2 puffs morning and 2 puffs at night, same as I did with Seretide. The doctor said it was the same strength due to the particles being finer? Not sure how true that is.

Thank you.

1 like
Reply
Hidden
Hidden
in reply to Shell8124

I was told the same..it is disputable..Now I am on stronger stuff again but so much better for it. I was up at night for months gasping for breath..honestly I remember my first consultant appointment she was great she was an asthmatic she said Fran the key to asthma is finding the right inhaler, well I have 4 now!!!

So if you don’t feel well get a check-up again..sorry..x

Reply
Shell8124
Shell8124
in reply to Hidden

Can I ask what preventer inhaler(s) you are on now?

Did you have to ask to be referred to a consultant?

1 like
Reply
Hidden
Hidden
in reply to Shell8124

Since then they found out I had a lung disease..after a ct scan so I have Ventolin and Atrovent on demand and twice a day 2 puffs of Salmeterol and Ciclesonide.

Yes I was referred pretty much straight away but it took them years to give a CT scan! After a couple of pleurisy..

Anyway now I just see the hospital every 6 months except if I need help but fingers crossed got that new treatment in June and I do physio it’s ok.

Take care xx

Reply
Superzob

I have to admit to getting quite angry at these posts because it looks like the medical profession has lost its purpose. I can quite understand giving Fostair to someone newly diagnosed with asthma (as I was last year), or to someone whose asthma is not currently well controlled, but not to someone whose asthma IS well controlled, simply to save a few quid! "If it ain't broke, don't fix it"! I hope you get a speedy resolution to this; in the meantime, if Asthma UK is monitoring this post, they might wish to have a few strong words with whoever advises consultants and GPs on prescribing inhalers. The emphasis should be on the health and welfare of the patient, not on some minor saving which, given the negative results of this policy, would seem to be a false economy.

1 like
Reply
Shell8124

It is very frustrating that my asthma was the best it has ever been while on the Seretide, and I was taken off it to save money. I ran a 10k obstacle course while on Seretide, and although I took my Ventolin for piece of mind, I knew I wouldn't need it. I wouldn't consider any sort of race now.

The nurse has changed my inhaler to Flutiform, and given me Montelukast tablets. I don't know if this is going to help yet, but it's nice to be trying something new instead of struggling along with Fostair. Still confused as to why the doctor told me my only option was Fostair, while the nurse was deciding between Symbicort and Flutiform?

She has also advised me to ask the doctor to refer me for allergy testing.

Fingers crossed that things will start to improve.

Reply
elanaoali
elanaoali
in reply to Shell8124

Hi all this talk of cost and being switch to other inhalers. I am on seretide 250 2 puffs twice a day in the autumn/winter. I asked to try another inhaler ie. cheaper and faster acting. I won't try and name it here as I can't remember but I was another combination inhaler. This is because I get oral thrush on seretide.

I tried it (this was early this year Jan/Feb and within two days I was coughing so I ask to go back onto seretide. I wasn't told no you can't have it I just was put back on it no questions asked.

In fact the asthma nurse who used to look after me until a year ago. (20 years experience) said if Seretide works for me then I she would let me stay on it. She said yes seretide was more expensive but that was OK.

I understand the pressure GPs and asthma nurses are under and fully aware of the cost. However I have never been pressure as you can see above to change just because of cost.

I just want to that you all have my doctors practice, the asthma nurses and the receptionist. Voted second best out 10 best practices where I live.

In fact I was told today by asthma uk helpline nurse that 9/10 asthmatic have trouble with their GPs. This I found hard to imagine as I never had any trouble. I just felt supported and the asthma nurse who last saw me in August. (I was going back onto higher dose of seretide 250 instead of 125) said I know myself very well and was quite happy with my request. This upping of my seretide was recommended by the asthma helpline nurses so I would be caught out like I was last year. I was on just a preventer and didn't up it that early. I went into September still taking it. I got to the end of September, it rained the tree spore fell off the trees and down I went very quickly within an 1 hour of the heavy rain shower. (was told that was my trigger for my asthma attack by doctor afterwards.).

So I would say fight for yourself with the back up of asthma UK helpline nurses. They always help me when I not feeling very brave like today. See my latest post and what happen to me today.

It not above saving money in the short term but keeping yourself well so you don't cost the nhs more money by having to call an ambulance or going to A & E.

Just to add I have allergic asthma and take moneklaust 10mg every night too.

1 like
Reply
Hidden
HiddenAdministrator

Hi all,

Shell8124 Do call the Asthma UK helpline to talk through your medications and advice and support. They can be reached on 0300 222 5800 (Mon-Fri 9-5).

I've shared this post with the rest of the health advice and helpline team here at Asthma UK.

We've looking at our advice and content about dealing with healthcare professionals over the next few months so your input and experience are really valuable in helping us understand what your needs and concerns are when dealing with GPs and nurses.

If anyone would like to chat about it further that would be great, add your thoughts to the thread, PM me or I can be reached on aghosh@asthma.org.uk

Thanks,

Dita

1 like
Reply

You may also like...