Fostair making me worse 😢

[jamieb977]

Hi everyone,

After waiting 11 months for a full lung function test I got referred to the severe asthma clinic, they put me on fostair nexthaler 100/6 Mart regime instead of seretide 125 I was already feeling sob and difficulty inhaling on that but I've only been on fostair for 6 days and it's definitely getting worse by the day, am laying in bed typing this now feeling like I'm struggling to breath, it also seems to be causing me bloating, indegestion and loose stools

I guess I'll call my gp on Monday and see what they say, im so frustrated with it as I waited nearly a year for these tests and now I feel worse than before.

I saw the respiratory physio whilst there who says I had hyperventilated lungs so gave me breathing exercises, but is hyperventilate the same meaning as hyperinflated I wonder ?

Also said my lung function is good which I really don't understand as I feel sob pretty much all the time. My results are below.

FEV-1 = 2.89 (89%) FVC = 4.17 (104%)

FENO = 40

EOSINOPHIL = 0.41

OXYGEN SAT = 99%

I dont know what I'm asking here really, just wanted to vent my frustration, any advice would be greatly appreciated

[Patk1]

Ru sure U don't have a virus/ibs

[jamieb977 in reply to Patk1]

I have a sensitive digestive system and get reflux etc so avoid certain foods that I know set me off, asthma and digestive issues are quite common together, I have up drinking milk a few years ago as it made me feel bad and I have now discovered that fostair contains milk proteins.

[Poobah in reply to jamieb977]

I think it's just the dry powder version of Fostair which contains milk protein. There's an aerosol version that may suit you better. Most dry powder inhalers have milk protein which acts as a stabiliser.

[Homely2 Administrator]

Not totally convinced that your lung function tests are indicative of good lung function.

My local hospital consultant takes feno of 40 as indicative of asthma, and fev1 over fvc ratio of less than 70 percent as indicative of asthma.

Ring the asthma UK helpline on 0300 2225800, Mon to Fri office hours, to discuss your results with an asthma nurse.

Re the fostair for me it works well but it took me easily a month to settle down with it, initially I disliked it, so you may have to give it time. However some inhalers suit some people better than others.

Breathing exercises have been great for me, but take time to improve your breathing, asthma UK do a online breathe easy programme which is worth doing.

After talking to Asthma UK, go through it all with your GP.

Never allow them to fob you off, get as much knowledge as you can, so you know what to ask your medics for.

[jamieb977 in reply to Homely2]

Thank you for the reply, basically they described it as lung function good but described feno of 40 as slight inflammation and raised eosinophil's. I'm gonna soldier on with the inhalor but might give the helpline a ring on Monday for advice on options going forward

[Ellydean in reply to Homely2]

Hi Homely, may I ask what symptoms you were feeling during the 1st month before settling down with Fostair? The reason I ask is because I started Fostair myself and it felt like it was working nicely for a few days but then I felt a very uneasy feeling in my chest especially at night. It didn't feel healthy so I've discontinued for now...

[Homely2 Administrator in reply to Ellydean]

I was a bit more breathless, tight chest etc. My system does not like changing inhalers, so takes time to settle.

If you are feeling uneasy with your fostair have a chat with your medic.

If your medic has prescribed fostair then he or she must feel you need something, so talk to them or ring the asthma UK helpline, they are really friendly. Asthma scares me so do not just leave it.

[In_the_bardo]

Sounds a little like my experience. Diagnosed with late onset asthma about two years ago with a FENO of circa 40. Went on to Relvar, saw an immediate reduction in my FENO, an immediate increase in my peak flow and then had immediate difficulties (ironically) with chest discomfort and shortness of breath. Felt like my lungs were inflated like a couple of balloons. Almost certainly disordered breathing having spent years with undiagnosed lowkey asthma and so overcompensating in the mechanics of my breathing. Have done NHS exercises to reset my breathing pattern but never really quite worked, although absolutely worth reading about if you haven’t yet. I’ve since stepped down from Relvar to a standard brown inhaler and that led to some small but very real improvements with the discomfort and shortness of breath without impacting my peak flow too much. There’s a kind of Goldilocks level for me, where I have enough medication to limit asthma symptoms but not so much medication that I struggle with hyperventilation. Never quite consistently figured it out, though.

[My_fairy in reply to In_the_bardo]

How do they find out overinflated lungs? Is it through xray?

[jamieb977 in reply to My_fairy]

I had xray a year ago roughly and results were normal, I will quote the asthma physio's words which was news to me. She's given me exercises to do, stop mouth breathing and use my diaphram

' I feel Jamie has a breathing pattern disorder with a fast rate, large tidal volumes and erratic, he is hyperinflated even at rest '

[My_fairy in reply to jamieb977]

Thanks for the reply. Do you feel exercises make a difference? My daughter has severe asthma and she can’t breathe in attacks her heartbeat gets fast. Therefore, we have had a lot of trouble in her acute attack she was misdiagnosed with dysfunctional breathing and exercises make no difference to her condition. She’s regular bronchospasms.

[jamieb977 in reply to My_fairy]

I've only just started them and to be honest probably don't do them enough times in the day, but I'm being conscious of breathing slowly through my nose when I catch my myself mouth breathing.

I havnt had any noticeable difference though. But as I've changed inhalor at same time hard to tell.

If feeling breathless then HR will rise in response which can be scary/disconcerting. Basically the heart pumps blood quicker to get oxygenated blood around the body. Also being breathless can make you anxious which causes the fight or flight relfex so like a vicious circle unfortunately.

I dont know how old your daughter is bit often childhood asthma massif improves or even disappears into adulthood

[My_fairy in reply to jamieb977]

She’s 15 now… she does breathe through her nose only in attacks she gets high heart rate and her nose gets blocked aswell …. it’s been a struggle with her asthma control… they gave her all the adult meds which aren’t even allowed for children… I appreciate your help and I hope inhaler makes a difference we haven’t seen any difference with exercises aswell

[jamieb977 in reply to My_fairy]

Sorry to hear she's going through it especially at that age and I hope things improve for her in time,

[jamieb977 in reply to In_the_bardo]

I've had asthma since a child and in my 20's after an exacerbation was put on the brown clenil modulite but I felt good so didn't bother taking them to be honest just used my blue one,

So soundsthe same as you, over time of asthma not being properly controlled its caused damage I guess.

I have found if I dont take any steroid in the morning I dont feel so short of breathe but bit more wheezy if that makes sense , it's like the steroid makes my lungs tight and hard to inhale ? Strange

[Patk1 in reply to jamieb977]

Try using salbutamol 10mins b4 steroid inhaler

[jamieb977 in reply to Patk1]

Thanks ill give it go, especially in the evening as I usually wake up a,little wheezy and use my blue one first thing anyway

[Patk1 in reply to jamieb977]

It dilate the Airways so steroid should get absorbed better+ b more effective for u x

[My_fairy in reply to jamieb977]

Yes it’s difficult for her… she’s had it since very young age almost baby … she gets random exacerbations also therapy resistant … she was controlled previously brown is a good inhaler in her case helped her for years but now severe persistent asthma and steroids aren’t as effective…

[Superzob]

Quite a lot here. GPs went through a phase of offering Fostair to many people because it’s cheap and works very well with some people - but not everyone, so you might ask to be put back on Seretide. Responses to inhalers are very variable between individuals and, as my GP once said: “Asthma is big business”, which is why there is so much choice with inhalers.

Your lung function tests were indeed very good, which probably implies that you have no fixed small airways obstruction (COPD). But, as asthma is reversible, you could still test well but have symptoms caused by the asthma; also, again, there is a wide variation in lung function symptoms, and those with poor test results can have virtually no symptoms at all, and vice-versa.

As I’ve said in many previous response on this subject, the object of the exercise is to get you to feel as well as possible; if the treatment is failing to achieve that, then it might need to be changed, regardless of your test results or theoretical response to medication. In my view, definitely worth pursuing with your GP and/or respiratory consultant.

[jamieb977 in reply to Superzob]

Thank you I will definitely have explore more options, my asthma wasn't controlled on the seretide but it was better than all the other things my asthma nurse tried me on before the refferal to severe asthma clinic, someone here mention the inhaled version of fostair might be better than the powder I suspect will they try that next.

[Superzob in reply to jamieb977]

Ah, that might be the issue. I'm intolerant to the aerosol in pressurised inhalers and use dry powder: however, many people are exactly the opposite (the individual variability again!), and that might also apply to you. Beware, though, that there might be some resistance to prescribing the aerosol inhaler for environmental reasons but, in my view, medical need trumps environment.

[Lysistrata Administrator Community Ambassador in reply to Superzob]

Those lung function results are just under 70% FEV1/FVC ratio though (ie FEV1 is <70% of FVC). For asthma at least (and there's debate on COPD though guidelines use 70%) they *should* actually be using a ratio that's at least based on age/sex/height and NOT using the same cutoff to decide the level of obstruction for everyone. It's a very crude way of interpreting, and I assume they decided it was fine as it's 'just' below 70%, even though that's not really the right level to judge everyone against. I'm not in a position to diagnose of course (I'm not qualified and this is a forum), but I feel like they shouldn't have just decided the lung function was good on these results.

I completely agree with you though on reversibility and lung function not necessarily showing what's actually going on - all the more reason for them to be doing something. I definitely have a mismatch at times.

Jamie, I agree with Homely2 above - definitely call the asthma nurses and go with his other suggestions too. YOu may well have breathing pattern disorder but it doesn't mean asthma can't also be a problem. 0300 2225800 or WhatsApp on 07999 377 775 Monday-Friday 0915-5pm

[jamieb977 in reply to Lysistrata]

Thanks for the information, I thought copd was just based on the fev1 score not the ratio but im quite new to all this, I had a ct angiogram about 14 months ago and in the notes there was ' minimal emphysema in the lungs ' heart/arteries were perfectly fine btw. I've always thought it could be copd but my asthma nurse ages ago said cos of my peak flow readings and the spirometry she gave me, I'm always a certain level sob so doesn't seem reversible to me

[Lysistrata Administrator Community Ambassador in reply to jamieb977]

Both asthma and COPD can have low FEV1 and obstruction (the number you get for FEV1 divided by FVC is under a certain amount). But generally with asthma it should be reversible, even if it doesn't stay reversed. It can be hard to find the pattern with lung function though as it's not done much and you could be fine on the day or not fine every time.

[jamieb977 in reply to Lysistrata]

I just had a look at the letter and there is more figures I didnt really notice before also I had a 2nd spirometry at clinc which says the ratio of fev1/fvc was 0.79 on that day which says to me reversibility but you seem really knowledgeable on interpretating these readings. Also there is two other readings I didnt mention before.

MMEF 75/25 = 57% DLCO = 103%

2nd fev1 = 2.94 / fvc = 3.88 ratio = 0.79

I found it hard to really get any information from googling whether 57% is quite bad because it seems it, the Dlco one seems good from what I have read.

[Hidden]

Hi. I know this isn’t entirely helpful. But, I was told I have airways hypersensitivity/responsiveness, essentially asthma. A few months ago, my doc told me to try Symbicort. I discovered that actually made my symptoms worse. So, I completely stopped using it and am actually much better. I have a rescue inhaler if needed which I rarely use.

I tried pulmicort and Zenhale as well. I wasn’t happy with any of the side effects. The point is, I’m actually better off not using any.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I'm glad this seems to have helped you Dthb and I appreciate you're just sharing your own experience. But for others reading, please don't assume that you will be better off with no preventer at all if you have asthma, even if you're struggling to find the right medications.

It's possible to have quite significant airway inflammation without really noticing it day to day, and it isn't safe to just leave that (Jamie, I noticed you seem to have some inflammation based on the FENO and eosinophils). I appreciate the difficulties for those who've struggled with the different options, but as others have suggested, it can take some time.

[Hidden in reply to Lysistrata]

Im definitely speaking my experience. My exercise routines and daily living improved once I stopped those meds. I do keep the rescue inhaler with me. This is simply to let others know that lifestyle changes can improve symptoms. Since I lost 20lbs, stopped liquor and unhealthy snacks, every aspect improved including my asthma. Just food for thought. 👍

[Lysistrata Administrator Community Ambassador in reply to Hidden]

I appreciate that and lifestyle changes like you made can certainly improve asthma for some people - but it won't necessarily be the case for everyone. And as I said, it's possible to have airway inflammation *without* symptoms. It's generally not recommended now to use the reliever alone without preventer. It's your choice to do that but it doesn't mean it's safe for others to do the same, or that they would have the same result if they stopped.

[Hidden in reply to Lysistrata]

I have consulted with my doctor. I have had asthma for the better part of 53 years. So, I have spent many years experimenting. Again, I’m only mild to moderate. Only sharing. Not telling others what to do.

[Hidden in reply to Lysistrata]

Before I leave this forum, is it not for everyone to share their personal experience? The impression I’m given is this is purely about medications, treatments and what’s most effective.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

It is to share personal experience - but sensibly and cautiously, within the community guidelines. You don't have to explicitly tell others to do something to seem like you're suggesting it. Saying you had great results doing or using xyz can absolutely come off as a recommendation for some people, even if you say it's your own experience.

Community guidelines are here: healthunlocked.com/asthmalu...

In this case I would particularly emphasise these points:

•Be aware that protocols for managing asthma and dealing with acute exacerbations may vary vastly, particularly at the severe end of the spectrum- if your protocol is unusual, please exercise caution and judgement in posting about it to avoid giving others the impression that it is safe for them to behave in a similar way.

•The information posted on HealthUnlocked can support, but will not replace the relationship between you and your doctor or any other healthcare professionals. Information from this site may inform your discussions as well as the exploration of treatment options with your healthcare professionals. You should always consult a healthcare professional if considering changing your medication or treatment. Therefore please do not try to persuade users that medications or treatments are harmful based on personal and anecdotal evidence.

[jamieb977 in reply to Lysistrata]

Thank you and yes different strokes for different folks I wasn't considering ditching my preventer, I used to notice if I missed a dose of seretide

[NLGA]

I had a spell where my deteriorating asthma was the reason for my breathing issues

After a spell in hospital it was discovered I have AF and that was behind the asthma like symptoms

[jamieb977 in reply to NLGA]

Arterial fibualtion yes? I didnt realise that would cause symptoms like that, I had a heart monitor for 7 days last year so think that would have picked up that

[NLGA in reply to jamieb977]

AF makes me breathless

I was with a cardio specialist last week who said it’s definitely the AF more than my asthma so much so at times I am gasping just walking upstairs. Sometimes I need a fan a foot away blowing cool air into me