Recent resp. Appointment - new meds

[Amy2091]

Just wanted to update some of you on my recent app (should have been in April, thanks covid 🙄)

So my blood test done in March showed my eosinophilic count had dropped to 0!!!! This is the best news ever! And the lowest it has ever been! And overall I’ve felt so much better during the shielding process but have also convinced myself that that’s because I literally wasn’t doing anything! Although, my peak flow has risen a little which means we have wrote up a new asthma plan - all positive so far I guess!! Although now that I’m back at work and my life is returning to normal, I don’t feel my asthma as perfect as it was a few months ago.

I’m just worried that it’s not an accurate reading - at the time the blood test was done I was taking part of my rescue pack, 8 steroids a day for an infection, so I’ve had another test done this week to find out it’s ‘true reading’. If it is still elevated (like it’s always been) they will look at getting me onto biological therapy (finally!) but I’ve also been referred to chest physio (this will be a new experience for me and I have no idea what to expect - please share ur experiences?) and have an extra medication to try - as if I need anymore!! to see if it will help with the mucus I never feel like I can shift.

I’ve administered Carbocisteine to patients in my previous job but never really understood how effective(if at all) it can be. What are your experiences?

I will start on 3 a day for 2 weeks then 2 a day following. I’ve been advised that it is up to me if I wish to continue on them or not I’d they work but I was warned they may cause stomach issues (Ugh!)

I’m really not happy that it’s not a “one a day” tablet as 3 or even 2 a day is just an inconvenience - depending if it works obviously! But I’m optimistic that it could make the different I need!

[Lotti_321-]

It’s true at least for me that being on steroids can alter blood test and not be a true reflection. My team always try to do them a few post steroids to get a clear picture. So hopefully your more recent test will show a true reflection of where things are at.

I’ve been to physio and they review that you are breathing correctly and it’s not dysfunctional. They can also support you with lung clearing etc.

I’m on carboceistine I felt like it made a huge difference from my mucus not being as sticky and therefore easier to cough up. Thinner also so doesn’t plug up my airways as badly,

It’s a pain at first with 3 times a day but then when it reduced to two it’s just a routine of taking it with other meds. I find it really useful to have (and increase back to 3 times a day on instruction from drs) during a flare up. It never personally affected my stomach.

[Amy2091 in reply to Lotti_321-]

Thanks lottie, yes I’m happy that this test will be a true reflection as it has been a long while since using rescue meds and I’m still feeling ok.. so be nice to see if it’s still relatively low. I’m expecting a call with results and a ‘next step’ but nothing yet.

I’ve been looking up chest physio but a lot of it was breathing techniques which I didn’t feel I needed, I think I manage my breathing quite well even during attacks but I’d defo benefit from any advice on clearing my chest, although I feel great atm, it can feel like hell when it’s bad.

The Carbocisteine and what it does makes me want to vom and I’ve not even tried it yet (LOL!) il give it a go at least. Do you feel like you NEED it now that you’ve been on it a while and got used to it? I don’t have much mucus atm but mornings are always tricky even when I don’t have “much” so it could be good for me, I’m just a bit pessimistic this week

[Lotti_321- in reply to Amy2091]

Sometimes I think they refer to physio to rule things out as like a second more specialist breathing pattern disorder overview. I felt I wouldn’t benefit but they still wanted physio to see me & rule it out because I wasn’t responding to treatment.

I definitely feel like it’s harder to shift if I stop taking it. It’s not been a wonder fix but certainly improves symptoms I’ve got. Why does the thought of them make you want to vom? It is hard starting a new med as it can be scary the unknown of how it affects you, but may make things easier and the mornings not as much of struggle. I also found it reduced my number of infections as my lungs were clearer and not a breeding ground for bacteria

[Amy2091 in reply to Lotti_321-]

Ye maybe, it will be worth seeing what they offer anyway. She only suggested when I said about the struggles bringing it up when I need to so assumed nothing would be needed regarding breathing but I’m open to whatever lol.

I think it’s cause I know they’re used for mucus (cringe) I’ve seen many things in my previous job as a care manager and feel I can handle almost anything but mucus is a huge no, even my own lol. I avoid sputum tests like the plague and hate having to even look at it (probably more of a mental problem lurking there lol) I will at least give them a try but I just feel like I already take a TONNE of medication - all for asthma, and 2 extras for other things I get so embarrassed when asked what I take (stupid maybe but I just hate it lol).

[EmmaF91 Community Ambassador]

Hi

Glad you hear that you’re doing so well atm!

Whilst pred can affect eos count, they will also look at the big picture. If you’re feeling really controlled etc they may not refer, but if you’re not they might regardless of eos count. I’m not sure if you’re just under a local hosp or have a tertiary (specialist) center, but if you’re having issues it’s worth the referral if you aren’t. They look at the full picture, so look at all the comorbidities and mimics, but also are used to working out best drug combos for people. If your eos count has been high in the past and caused issues, and it’s just ‘randomly’ fluctuated now then you may already have a score high enough for a MAB if it is needed, eso if you have an extensive steroid history...

Hopefully it’s not tho and 🤞🏻🤞🏻 you’ve got control back without it!

I think most docs are aware how ‘not normal’ this year has been. For months a lot of us were not doing normal everyday activities so it’s not an accurate representation of how we are...

But hopefully as you’re feeling good and controlled things won’t need to be escalated to MAB!

As Lotti said, resp/chest physio is a common referral. It checks for BPDs etc but can also teach you chest clearing techniques. It’s nothing too massive. If you have a BPD they’ll do a few follow ups to check you’ve got it under control, if you don’t then usually it’s a one off ‘here are techniques’ thing. No stress and generally helpful, even if it’s just so you can turn round and say ‘I don’t have a BPD!’

I have also used carbocisteine in the past, however now I tend to only use for short bursts when I have lingering chest infections (when I know I’m not shifting the gunk). When I was less controlled I was on it full time - the initial 3x a day was annoying, but then once it was x2 I just took it with my other meds. It really did (and does) help me shift it!

Hope things work out well for you. Good luck

[Amy2091 in reply to EmmaF91]

Hi thank you, so many abbreviations there that I’m not sure I understand haha! I was referred to our hospital resp team over a year ago after having had severe asthma all my life - it’s a team of nurses and consultants who work together to get ya where we need to be. They have been so informative and great tbh.

My eos count has always been around 0.8 throughout my life, occasionally dropping to a 0.6 at best. I’m lucky that she tests this at almost every appointment every 4 weeks, lockdown has certainly had me feeling better so fingers crossed SOMETHING is going well lol! But due to the high amount of steroids I don’t think either of us are convinced just yet lol.

I’m looking forward to the physio, I’ve woken up many of times struggling to clear my chest and have had a sudden urge to try physio (without even knowing what they could offer) so I’m excited to learn any tips the can show me! And tbh, is anyone currently breathing perfectly with these masks??! That’s the one things I feel is making my good breathing seem a bit pants.

It’s good to see that you are able to only use the carbosistine at times where you need it rather than every day, I’m hoping this is something I could do (if they work lol) I just hate adding another med to the list (Ugh!) that being said I could see a massive improvement so I’ll at least try x

[EmmaF91 Community Ambassador in reply to Amy2091]

(Sorry 🤦‍♀️😅. Let me know any you don’t understand. But pred= predispose, eos = eosinophils, MAB = biologic (cause they all end in mab... mepolizumab, benralizumab etc etc) BOD = breathing pattern disorder. If I’ve missed any just say 😅😂.)

Glad you have a supportive team atm! If your eos are only down cause of the pred then I’d definitely push for the referral to a specialist centre! 0.6 is high enough for MABs (I think 0.3/0.4 is the cut off), so if you feel like it’s only low due to steroids or inactivity then ask for the referral anyway. There’ll be a waiting list anyway so better to get on it now than wait til you’re struggling again. You can always come off the list if you decide you don’t need!

Good luck!

[Amy2091 in reply to EmmaF91]

Thanks, I think I guessed most, we don’t seem to have specialist centres here, not that I am aware of at least. The biologics have been spoken about for ages but thanks to covid delaying it, and the low count, we are just waiting to see what happens.

[HannahBenson]

Hi Amy...I had your problem for over two years and kept being given steroids which would bring my eosinophil down to 0 and as soon as I stopped the steroids...it would shoot back up. My advice is to get on a biologic (Nucala is for eosinophilic asthma) as soon as you can because long term steroid use can cause many many side effects and it lowers your immune system so almost impossible to get ahead of illness. I get an injection once a month and have been on since early 2019. Have not had to take steroids for any illnesses and only an antibiotic for a sinus infection. I hope you can take this as it was a miracle for me. Hannah

[Amy2091 in reply to HannahBenson]

The team spoke to me about it at the start of the year and basically said it’s amazing, for me too not just the eos count! Which is obviously what bothers me more lol. I have my fingers crossed that it’s a possibility as it does sound life changing. I don’t take steroids every day but have still had way more rescue packs than I should be and I hate them, for all the obvious reasons and side effects. I am overall feeling like things are coming under control atm without a biologic but I think from what my nurse said she wants to see if my eos reflects that. My allergies are really effecting me atm but she thinks that could be down to the inflammation rather than the allergies meds not working so I’m just waiting now lol