Is there hope for difficult to control asthma and eosinophilic asthma?

[mylungshateme]

Hi guys,

Feeling I don't know bit confused and shattered 🤪.

Meds I'm on - relvar 184/22, tiotropium, montelukast, avyms, loratadine, prednisone was on 40mg reduced 10mg weekly got to 10mg maintenance last fri, last night back up to 20mg 😪. Zerobase gel and emollient for eczema and itchy hands and feet...

So my lungs really do hate me atm. A few queries..

1, previously told by respiratory team severe uncontrolled allergic asthma and eosinophilic asthma. Yesterday I queried this more just which "title" I come under and was told "you can have severe asthma, but with right meds management completely controlled, where as yours is very difficult and just not responding to treatment and we've yet to find something that works" so when I researched "difficult asthma" I feel it implies the patient is non- compliant with meds for whatever reason - I assure you I am and am open to try anything - I'm waiting list to start biologics. Or have I missed understood it and being a bit sensitive? 😂🤣.

2, if my breathlessness gets worse I've to be blue lighted into hospital the respiratory nurse has put my name on board so they will look out for my name on admission for complex respiratory team to see me - ( she seems sure I'll be in hospital) she (respiratory nurse) also said I have to have a very low threshold for hospital admission as high risk of life threatening attack... I tried explaining but this is my new norm I can't walk up stairs or push my baby in pram some days she said it should not be like this at all.. and i may need magnesium and steroids iv as well as nebs but there short lived.

She said if I've made it until tue at home to ring gp for urgent hot clinic again ( was there 2 weeks ago)

Oh and she said i absolutely cannot work while like this and to discuss disability benefits at my appointment with consultant thurs.

Now I'm not sure how to take all this? I feel she's talking about someone else as I'm not that ill like everyone else. Oh and up all night bar 1hr sleep - prednisolone and my alarm goes off in 1hr for my 10hr shift at work..

I rang respiratory team for advice and check I was ok to increase prednisolone as breathless got worse since wed had 4 days where it was better. But got more than I bargained for. Haha. Besides a magic wand any advice, reassurances, jokes anything really 🤪🥴😁😴x p.s sorry for long post.

[EmmaF91 Community Ambassador]

Hi

The label severe/difficult are often used interchangeably and together at a local level. Severe basically means you’re max therapy and struggling and difficult means that you aren’t responding to meds as expected (ie fully controlled). Usually it’s the tertiary hosp which decides on your official diagnosis, but difficult is not always about compliance issues, it can just be ‘we can’t get you controlled’, whereas most SREA/SEAA can get controlled with the right drugs. I’m glad you’ve been referred for bios, but it may be worth chasing the waiting list (or having local chase it). You can as to be on the cancellation list with whilst it’ll give you short notice it can speed up the process.

Are you keeping an eye on your PF? Cause it sounds like you should be heading to hosp for extra help if you’re unable to do stairs etc as a young person. Struggling to walk/talk/eat/sleep normally, with 10 salb not working/lasting 4hrs means you need to go hosp, esp if you’re struggling like that on 40 pred. From experience the relief of the mag/hydroC etc allowing me to breathe is great, and worth the trip in! Don’t put it off, it puts your life more and more at risk, and with asthma they’d rather you come in at the level you sound at rn, than waiting until things are life threatening/near fatal etc

The way you are functioning rn, it does sound like you probably shouldn’t be working (depending on the job), however as someone with the same diagnosis (SREA & SRAA) I am able to work. I work part time, as I don’t think I’ll cope FT, but I have also just applied for PIP and in the past have had a blue badge which is something you can do at home, just remember to base it on worst days! (I forgot to do this on my reapplication when it ran out and so got denied 🤦‍♀️. Waiting for PIP result til reapplying)

On a more positive aspect, I have found MABs have really helped get me more controlled. I’m still what would be classed as difficult as I still require admissions, but I’m down to 7 hosp trips a year, when pred it was every couple week to resus, with LT asthma attacks.

Have you tried theophylline/aminophylline tablets? I know for some that they can really help get some control back, however it’s an ‘old fashioned’ drug docs arent always keen on prescribing. Also not sure if you’ve tried fexofenadine, but if you haven’t that may be better to help with your allergy component compared to the loratadine. The other thing to consider is slower pred weans. I typically do 5mg a week, but my team are contemplating making me do 1mg/week after 20mg cause lungs complain too much - remember if you’re getting issues you shouldn’t be dropping pred!

Look after yourself, I know it’s scary and that there’s always something else you need to do, but it really does sound like you probs need a&e. If you burn the candle at both ends and ‘ostrich’ about the fact that you need hosp, you are putting yourself at risk of a fatal attack. Also give AUK a call on 0300 2225800 (9-5 M-F). Trust me they are very good at knowing when someone has to got to hosp (a few friends have been ‘bullied’ in by them in the past 😅😂) so if you need the ‘reassurance’ that that is the right thing to do then do that!

Good luck, hope you hear back quickly about a MAB (I’m guessing they’ll try dupilumab if they can as that does both eos and allergic asthma) , and please don’t wait out going to hosp!

[mylungshateme in reply to EmmaF91]

Hi emmaf91

Thank you so much for that info. Yea my pf atm are stable as in last 3 days at my best but since lockdown fluctuates hugely between 240-450. My best is 400 75% 300 50% 200. But my pf are strange they go up when unwell then drop after... same as sats and generally dont get wheeze.

I'm a registered nurse myself but not in respiratory so this is all new especially living it... I'm so not used to being the patient I'm really struggling with that. Which is why I think I keep pushing myself because I'm not I'll like my patients so I'm ok everyones talking about someone else not me...

I've said today I'm finishing early and it's my last day. I did pack a few essentials in car just incase I stop by the hospital on way home... maybe it's time I stop and listen.

[EmmaF91 Community Ambassador in reply to mylungshateme]

Hi

If you can hit 450 then 450 is your best, not 400. Your best PF is the highest you can reliably hit within the last 6-12 months. So if you can regularly get 450 that’s your best, if you have got 500 a few times on particularly good days, that is your best (does that make sense?). It doesn’t change your numbers massively, but 220 will be your 50% and 75% would be 340. (My best (620/630) is a lot higher than my predicted (440) so I’m on the ball with PF 😅😂). PFs only measure the larger airways, but if you’re affected in the smaller airways more it won’t be reflected in your PF (I know someone who can be retaining co2 but be in yellow zone PF 😅). For more on PF if you’re interested 😅; healthunlocked.com/asthmauk... I’m sure you’re aware that if your sats ever drop to 92% you blue light it to a&e, as with asthma that’s a sign of life threatening issues.

Ok. I’m going to say to you what I said to a friends nurse the other day (who was claiming they didn’t need home, despite a massive migraine). I’m not sure what/where you work, but if (god forbid) your patient coded would you be able to administer CPR u til more people joined you, without putting yourself at risk? RIght now I suspect that’s a no. It’s hard to accept when you’re not well, but if you rephrase it into ‘could I safely do my job and save a life?’ then it might be more acceptable (the migraine nurse ended up going home early once I pointed this out... 😅). Remember sometimes to help others what you have to do is step back and look after yourself. I’m not sure what your specific job entails, but wherever you are there is the potential neeed for CPR unless you’re on 0 patient interaction (ie WFH). Nurses/docs are notorious for not getting help/stepping back and admitting they aren’t well. And it’s worse if you’re young (I’m coming from a young osteos pov 😅).

But yeah. I do think it’s time to stop ostriching in the river in Egypt and to get more help!

Good luck and hope you feel better soon

[mylungshateme in reply to EmmaF91]

Hmmm yes that's quite helpful actually to be a bit blunt. I'm on a 2:1 package atm so have a hca with me but yes I have full accountability at the end of the day. And at first my answer to your question is yes of course I can do CPR but actually right now I'm trying not to talk too much so how the hell am I gonna pound up and down when its exhausting for a healthy person without asthma... that has helped put it in perspective for me so thank you. Yes us medics are really bad. My pf markers are what my respiratory team set out in june but of course I've been on 40mg pred mostly since then. So have got 450. Again I didn't think of that doh. I'm realising I really am in complete denial with this I dont like admitting I'm losing control of my life. Or at least it feels like I'm losing control. Thanks again and hopefully things will change soon! 🙂🙂

[EmmaF91 Community Ambassador in reply to mylungshateme]

Yeah... if you can’t talk without getting breathless you can’t do cpr 😅. (I wasn’t allowed to even practice cpr my last first aid course cause the (para) course leaders decided that even tho my speech was ok, I had just chugged a neb 😅😂. As I said before, if you can’t talk easily and normally for a person your age you need a&e... definitely not being at work where you might be called into action at any point, even if you have 2:1 😅

Glad that it helped put it into perspective. As I said I’ve done this a few times with docs and nurses now (a friend has been in icu since dec and I ‘talk’ to the team a lot. Now bullied about 4 people home early, got to say ‘told you so’ when they’ve fainted on duty as they’ve refused to call it quits, and my pièce de résistance was making a doc take his inhaler on a few separate occasions and then bullying him into seeing his GP 😅😂), and I’ve learnt that bluntness and getting them to realise that whilst they won’t admit they aren’t well, they might be putting the patient at risk without knowing it. It sucks to do it (I hate guilt-manipulating people) but then, like you, they step back and realise that whilst they want to battle through it’s not actually safe for anyone. So I’m sorry I did it but I won’t apologise for my bluntness cause as you said it does put things into perspective and make things slightly easier to accept...

Now go forth and get control of your life back, and one of the steps for that is going to hosp nowish and getting more drugs so you can be more like you once more! Hugs

[mylungshateme in reply to EmmaF91]

Hahaha I so need you in my life emma! 🤣😂👌 thanks do you know what I will on my way home go to hospital. Unless its needed sooner. Thank you.

[Jollygood]

Oh my goodness. I'm a novice so I don't have any words is wisdom but I just wanted to say I'm so sorry you're going through this. I read your other post that you've gone to a&e so hopefully things will start moving. Big hugs & 💐. How are you feeling now?

[mylungshateme in reply to Jollygood]

Aww thanks jolly good love the name 😁👍🏾well still in amu. Very all over the place bit like my heart rate 😂🤣. They stick me on a neb because sob and resps high then heart rate goes high and resps still high an I go light headed. Vicious circle I feel with not much happening inbetween... still waiting to see if I'm going to respiratory ward as that what respiratory nurse said yesterday. 🤷‍♀️ I said I was going for a walk earlier they said umm no your not stay on bed. I'll try again soon 🤣😂🤪 bloody asthma lol.