Thank you Asthma UK helpline

[RD23]

I rang the Asthma UK helpline yesterday whilst recovering from my third attack and A&E admittance in a week, as I just didn’t know what to do.

They expert I spoke to was great, she gave me some really good advice and medications to explore with my specialist as well as other specialist consultations to request, something I’ll definitely be doing at my respiratory clinic appointment on Monday. She also directed me to where I can get help getting over the emotional side of an attack and today I feel like I have my fighting spirit back so thank you so much! I’ve phoned the helpline before and they were great then which is I phoned again and they were brilliant again.

On another happy note, my partner brought me one of those v shaped pillows so I could sleep with it under my ribs to try and ease the ache/pain in them and it’s worked! They don’t ache anywhere near as much as they did yesterday and I actually managed to get some sleep! A happy bunny all round!

[Lysistrata Administrator Community Ambassador]

Yay! I love the helpline, so glad they were helpful and got you back to feeling more human after what sounds like a horrible week. I generally feel more positive after speaking to them.

Hope this isn't hijacking but do you mind me asking what medications they suggested? I have a follow up after admission at my clinic on Monday and I'm out of ideas of what to ask for the continually grumbling lungs!

I can't have any of the new funky drugs as wrong kind of asthma. Realise we are all different and you may well suit something different but thought I'd ask for inspiration...

Hope your appt goes well on Monday. Can't remember if you have an A and E plan or summary or anything already but wondered if it would be helpful for you to discuss with cons.for future? You may have done already though, I know it can be helpful but also not all A and E drs will acknowledge it.

[RD23]

Thank you, yeah I’ve got a plan that I put together with all my info on and my treatment but I could do with something signed from the specialist that says this is how my asthma presents.

Not at all, she suggested trying formoterol (I think that’s how you spell it) rather than my Seretide as it gets to work quicker and is more flexible dosage wise so as my hormones massively affect my asthma, I can add in or take away doses dependent on where I am in my cycle. She also suggested that given the fact my hormones have such a big impact on my asthma and I have other problems associated with them that I should ask if I can see a hormone specialist as hopefully if I can get my hormones under control my asthma will right itself.

She also suggested a different nasal spray; Dymista, for my allergic rhinitis as I still get nasal drip and it just sits in my throat 🤢 and she recommended washing out my nose and having a shower before bed to get rid of any pollen or other allergens that have collected during the day.

I get bad heartburn with pred tablets so she said I should make them aware of this as acid reflux can impact my asthma and also recommended I ask them to check my vitamin D levels as vitamin D makes your steroids work better.

I’m also now keeping a daily log of my symptoms, moods, where I am in my cycle etc to try and give a more rounded view of how I’ve been getting on.

It’s helped me get my fighting spirit back and I couldn’t fault her but I do wonder why my consultant hasn’t already suggested these things and why I’m always the one going out and doing research and seeking advice as I’m just not prepared to let my asthma dictate my life?

[Lysistrata Administrator Community Ambassador]

Thanks! Sounds very helpful. Have a friend who switched to Dymista and says it's amazing - she didn't expect it to be so good.

I have mostly used formoterol combination inhalers - used to be Symbicort and now Fostair Nexthaler. I find that better than Symbicort as it's a newer type of device meaning I don't have to have as much force inhaling. I used to find that when I was struggling I couldn't take the Symbicort properly which didn't help! Nexthaler is also fine particle which means it is meant to deliver more efficiently so you need less steroid etc for the same effect. Cons may have other suggestions too (Flutiform which is fluticasone and formoterol meant to be good too).

I do feel we have to do a lot of the running! I am a bit stuck atm and feel I need to suggest something to get them out of the 'you're not actively expiring' mode. However I have a bit of a psychological block with asking for things in appts. I had bad ones for years where anything I said or asked for.was dismissed and I was told I was fine and didn't need anything, so now I find it very hard to say how things really are and make any suggestions. I always get told to write it down beforehand but the problem is not remembering but actually managing to ask!!

Hope you appt goes well and is productive!

[RD23 in reply to Lysistrata]

Thank you and thanks for the suggestions, I’ll make a note of them before I go.

Yeah, I know what you mean, it’s a difficult and fine line as you don’t want to be seen to be telling the experts what to do but at the end of the day, it’s my body and my health and they don’t have to live with it day in, day out. I tend to write down what I want to say and I try to take my mum or my partner with me, usually my mum if she’s free as she’s more used to my asthma and also knows how to say what I’m trying to when I can’t think of how to word it. I think it helps me to have someone who’s more objective about it all there with me too as when I’ve been repeatedly bad, I get upset.

Good luck too and let me know how you get on.

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Hi RD23

That's really kind, I've passed your message onto the nurse team. Thanks for taking the time to share, and I hope your appt goes well.

Take care,

Dita