Pouting after today's appointment..

[Amy2091]

Apologies! This post is more of a rant than offering or seeking advice - although please read and offer me some advice for the fostair!

So, if any of you read recently I posted about my 2nd trial on the Fostair and the increase in symptoms.. Turns out I never actually pressed send on my email to my resp nurse when I needed her advice which is why is never got a reply (completely blonde moment on my behalf!) - Anyway, I changed back to symbicort after nearly 3 weeks due to a massive increase in symptoms (despite the good peak flow) much to her frustration (she did say it was my choice as the fostair was just a one off prescription for that month and I did try.. major eye roll!) it did help settle symptoms when switching back, at least it did until I caught a cold last week and ended up reaching for the steroids which il now be on for a further 3 weeks (cry!)

So today's app -- my last blood test showed eosinophilic count still at 0.8 so symbicort clearly hasn't helped in terms of bloods either - even though I'm comfortable on it otherwise. So I am now on my THIRD trial of fostair - this time my prescription changed to it permanently until further notice (sob!) any advice on how to make this easier to take??I feel like I choke on inhalation, which in itself is giving me poor technique (something I've never had with any other MDI, I also can't use any other kinds of inhalers as bad days let me down on the 'sucking' part!) unless is use a spacer - which yes is great when your having a flare up or need the extra help but day to day it is a massive inconvenience for me when on a good day or when I'm in a rush (I start work at 4am and have a manic life!) this May sound like such a petty excuse but as I've never seen a vast improvement when taking it, I'm very pessimistic about it ..

I now have to take this for a minimum of 6-7 weeks until I go back, by then I'm hoping the bloods may show at least some improvement! PRAY

Is it bad of me to hope that my bloods will be the same following this as it has been previously and for symbicort just so I can use an inhaler that I am actually comfortable taking.?. (sorry, moody lol!)

Next step is biologics, she is discussing me at a meeting to see if I meet criteria.

I'm still really uneducated about these but when I asked do they actually work for me and not just reflect in blood counts I was reassured they are pretty much excellent for 90% people like myself, so hoping I can get approved for this if I can knock the eosinophilic count down a little by then.

[Poobah]

Hi Amy. Whenever my asthma nurse tries a new med I have a telephone consultation about two weeks in just to make sure everything is OK. That's in addition to the face to face appointment after 6 weeks. Maybe something to consider that will give you more confidence on this Fostair trial.

You could also have a chat with your pharmacist about your Fostair inhaler technique. They may be able to help identify the issues. If they can't be resolved then at least you can demonstrate to your asthma nurse that you sought advice.

And if you're on a wet inhaler then you could try the dry version Fostair in case that resolves the problem.

[Amy2091 in reply to Poobah]

Hi poobah,

Ye this is now my third attempt, I've tried it twice previously for approx 3 weeks at a time before switching back to whatever I'd been on previously. I've never got on with it and the last month that I tried it I had 2 major flare ups - I think this is more coincidence than the inhaler itself but even so it certainly didn't improve anything.

She keeps saying if it doesn't work we can go back to symbicort but I'm still pressured a lot! Usually I see her every 4 weeks but I'm going longer this time due to the meeting, just a bit peed off that I personally haven't seen a difference but still need to push with this rather than something I'm happy with (neither seem to be improving anything asthma wise).

She let me try the dry powder at her office yesterday which was easy enough tbf but this was a good day - on a bad day I can't physically "suck" them properly to get the medication inside, I've always been comfortable with any kind of mdi, it's just THIS that I'm not, it seems to be a taste or something.. I'm not sure what that just catches me so bad at the back of my throat and makes me "choke" a considering this can also be used as a reliever I'm really surprised that it affects me like this but it's the same now as it was the first time I tried it, it is fine with a spacer but like I said, EVERY day, 4 times a day is huge inconvenience when I wouldn't otherwise need a spacer

I think I'm just moody that I didn't get my own way lol. I will stick it out as long as possible and ask her advice BEFORE changing anything this time, see if it helps, I doubt it, but meh.

[Poobah in reply to Amy2091]

It sounds like you know in your heart of hearts it's not for you. As you say, it's important to be able to deliver the medication for it to be effective.

I've tried meds and know how bad they've made me feel. But convincing some health care professionals that a med may not suit you can be challenging. Like they've never come across the situation before.

It's frustrating as all you want is to get your asthma under control but we have to go through these repeated trial and error scenarios until we find the right solution. Personally, I'm "this is NOT working, let's accept it and move on. What else have you got in your box of tricks?"

One last punt at a solution. Use Fostair morning and night when you're at home and can use your spacer. During the day use your reliever plus a steroid inhaler. That way you're getting all the meds across 24 hours.

Whatever you decide to do - good luck.

[Amy2091 in reply to Poobah]

Hi yes, it's very frustrating, it's not as if I haven't tried it in the past either, it's even more frustrating when last time she only gave me the one inhaler and said if it doesn't help me personally, just switch back to the symbicort that's on repeat, this time however it's just completely fostair (ugh). So yea, she knows damn well I've never got on with it, it just seems these fines mist inhalers are forced on many at present. IF it reduces the eosinophilic count then ye maybe she will have a point and I will have to try and manage with but atm none of them seem to be bringing this down at all anyway - so it's JUST an inconvenience altogether lol. If it doesn't help then I will 100% be stamping my feet I think as I've had 2 flare ups over the last 2 weeks just due to all the swapping back and forth etc and my personal symptoms (regardless of bloods) feel worse than they have done in years, despite having an oddly very good peak flow.

I only take the fostair (or symbicort) twice at Am, twice at PM, which isn't too bad, but atm due to a flare up I'm advised to double up, 4 puffs in a row isn't always doable, but then 4 separate times a day is not very realistic either lol.

Tbh I'm just feeling moody about it all and as if my personal reflection on something isn't being considered.

[hilary39]

Ugh, all sounds so frustrating. I'm sorry. Xolair has been a lifechanger for me for what it's worth!

[Amy2091 in reply to hilary39]

Thanks for your reply, ye I'm certainly frustrated as I feel I was actually going places with this specialist until this point too. But.. I will do my part.

Is xolair a brand name for biologics? I don't recognise it as being what she said but I honestly know very little about them.

She was very reassuring that they seem to be excellent for a lot of people so I'm quite excited that this may be a possibility- unfortunately I'm told there's quite strict guidelines to be considered so I need to wait until after April to see if I can give it a go.. fingers crossed - anything for a miracle.

[Lysistrata Administrator Community Ambassador in reply to Amy2091]

Butting in here a bit but just to say it sounds like they might be going for one of the anti-eosinophilic biologics with that high eos count.

Xolair is the brand name for omalizumab, which is anti-IgE so more for allergic asthma. The anti-eosinophilics are mepolizumab (brand name Nucala), reslizumab (Cinqaero), benralizumab (Fasenra); dupilumab (Dupixent) I think is on the way waiting for final approval. All have slightly different criteria but pretty sure your eos count would meet that currently; they also require a certain number of exacerbations in the last year (thi k it varies between them) which I think you have mentioned having in other posts? I am not on them because I have annoying asthma that is neither allergic nor eosinophilic, but there are a few on here who are if you want to know more.

Re the Fostair, that's annoying as it does sound like it doesn't work the best for you. If it's any use re MDI Vs other kinds, I am on Fostair Nexthaler and find it much easier to use than Symbicort ever was, especially when struggling. I find it really hard with the older DPIs (eg.Symbicort, Ventolin DPI) when less good but Nexthaler seems to need much less sucking power, so have not had the same issue ( but I know everyone is different!)

Crossed fingers you get somewhere with it all.

[Amy2091 in reply to Lysistrata]

Thanks for this - the mepolizumab sounds more familiar to what she said but I'm not 100% , I have bad allergies also but these are all quite well managed (usually) and it's defo more for the eosinophilic side of it whatever il get. Your asthma must be so annoying not knowing what kind and what could actually help (it's taken me 28 years to get this diagnosis mind!).

Ye I think I would meet the criteria based on the flare ups/infections/steroid use over the last few months alone, also she said due to the amount of meds I'm currently on. Really trying not to get my hopes up for it atm because it seems so good, yet something that might either not work or may not even get to try, her consultant will advise if I need to try something else again before it maybe?

Il certainly be doing my reasearch when I know it's a possibility.

I'll defo be peed off if I struggle through with this fostair for nothing mind! Lol.

I actually tried the nexhaler at her office yesterday and it was pretty easy! It also has the good sound so I know if I've managed to inhale it well enough which is good. I chose not to go for it though just because of previous experiences with dry powders on long term use and also I feel like I'm already swapping way too much atm as it is - but I'm not ruling it out completely.

[Lysistrata Administrator Community Ambassador in reply to Amy2091]

I think mepolizumab is usually the first anti-eos they try as reslizumab is IV (as opposed to subcutaneous for the rest) and benralizumab is only licensed if mepo doesn't work/isn't tolerated. I should think there is a good chance from what you say that it may be worth a go but I know the feeling of not wanting to count on it! It was considered for me before they worked out I don't have the eos.

Yes - I have some weird non-inflammatory sub-type apparently, just to add to the overall weirdness of not presenting typically! My consultant did mention bronchial thermoplasty last time but pretty sure that was nixed for whatever reason (and did they tell me of that decision? Like hell they did grrr).

Seeing cons on Friday which I am.expecting to be a horror show for various reasons, including a narky email I sent and a crappy test in December and just generally it being a bit crap and always seeming to not communicate. How I long to just quit clinic altogether...

[Amy2091 in reply to Lysistrata]

Oh what is a thermoplasty? This sounds so invasive? Such shame if you had hopes of it working for you though! There's no worse feeling is there? When I first became part of the hospital team I was so overwhelmed with their knowledge and support, but now I too feel so fed up, no longer seems about me, and I don't feel educated enough about any aspect of it to really argue anything. I'm also worried that if I do try it, and it doesn't work or whatever, there seems very few options to follow..

Good luck for ur app, it's s horrible feeling waiting for what you already know isn't going to go your way. My only advise would be just go with it, agree with it, and time your arguments well lol. YOU know your body and your symptoms better than those, and your the one who has to continue the rest of your life based on their decisions, let us know how it goes!x

[hilary39 in reply to Amy2091]

Yes, xolair is the brand name for Omalizumab. The two most common classes of biologics work by either:

1. Targeting IgE (Omalizumab) which is an immunoglobin that exacberates the allergic reaction--the medicine binds to the IgE so it doesn't produce as many mast cells and as much histamine (those are the chemicals our bodies make that make us allergic and asthmatic)

2. Targeting IL-5 (Mepolizumab) which is a protein that causes inflammation in the lungs. This medicine is particularly geared toward people with eosinophilic asthma.

Both biologics are tied to significantly fewer hospitalizations though you may still have flare ups. Typically to qualify you need to have severe asthma and have been on 1-2 or more courses of prednisone in the past six months.

Good luck!! Let us know what you hear-

[ChrissieMons]

I think you need a calm space and time to inhale the Fostair using a spacer. I know it seems annoying, but you can’t rush it because it won’t work properly if you do. You mustn’t suck hard anyway: just breathe it in calmly as far as you can. You have a very busy life, but if you don’t find these quiet spaces in your day, you might well be off work altogether! Invest the time in your health - it takes less time than brushing your teeth. Good luck!

[Amy2091 in reply to ChrissieMons]

Hiya, ye it works fine with the spacer but I honestly don't see my self being compliant with it for years if this is the only way I can manage it. If it makes a difference to my eosinophilic count at my next bloods then yes il have to figure a way around it even if it's a powder or something else they can do, but given that none of the inhalers I've used up until now have managed to do this, I'm a little bit "what's the point" of struggling with something I don't manage if it's going to be just as useful - or useless than ones I can manage.

Don't really think I can do anything until I've waited and preserved again, this time for hopefully a full 6 weeks, I'm not sure which I'm hoping for mind 😂 if it's made no difference then they can 100% screw it lol.

[LittleIreland]

Have you tried the Fostair Nexthaler? It might be more suitable for you.

[Amy2091 in reply to LittleIreland]

Yes I gave it a go at her office yesterday, it was actually ok to use.

I've always opted mdis as when I'm having a "bad day" so to speak, I don't feel like I get enough of the medicine inside. The nexhaler actually seemed a lot easier than ones I've tried in the past so I'm not ruling it out. Atm though I'm sticking to the MDi and god damn spacer just as she requested so I can at least say I've done it all properly lol!

[PabloSmith]

Hi Amy, Have you tried and Aerochamber?

[Amy2091 in reply to PabloSmith]

Hi yes I've been using one for years - only when I need a little extra help or a "bad day" usually though as I really dislike using any spacer if not needed. I'm currently using the large volumatic one again now though as part of her request also (eyeroll) - the only good thing about that is it's ability for storage lol x

[PabloSmith in reply to Amy2091]

i hear what you saying on the spacers lol. Cant say i'm a fan but mine isn't too bad, I use this one: amazon.co.uk/AERO-CHAMBER-P...