Questions about Spiriva and referral

[Celie1]

Hi, I’ve just taken my first dose of Spiriva and am always a bit edgy when taking new things 😅.

I realised after taking it, that the instructions didn’t say anything about shaking it before use, is that because it’s a different kind of inhaler to Fostair which is my other inhaler? Also it didn’t say to leave a minute between puffs so I didn’t, was I meant to? 😬

My heart’s pounding a bit which I’ve noticed after taking ventolin and my previous inhaler which was Duoresp Spiromax (2puffs twice a day of 320/9). I’m assuming it is the Spiriva which has caused this, is this a usual side effect? I don’t seem to get it with the Fostair, perhaps because it’s a lower dose 100/6? 🤷🏻‍♀️

I feel generally a bit apprehensive that my asthma is obviously getting worse hence the additional meds. and I’m wondering...if it improves again, would I then be able to reduce the Spiriva or is it here for good 😏.

I’m probably rambling a bit sorry. I spoke to a great Asthma Uk nurse, Claire, who said I should be referred to secondary care. When I mentioned this to the nurse at my GP she said there was no point at the moment as I wouldn’t be seen for months because of the knock on effects of Covid. Also they would probably put me on the Spiriva as many of her patients had been put on this after seeing a consultant. So we agreed that we’d see how the Spiriva went. So my final question is.. should I still be referred to consultant care for tests (Claire mentioned asthma/COPD overlap) even if the Spiriva seems to be working? So many questions 🤔🤦🏻‍♀️ Thank you in advance 🙏🤗

[EmmaF91 Community Ambassador]

Hi

I’ll start with the last one first... yes you should be referred. And even now you should be - the earlier you get on the waiting list the sooner you’ll be seen. And some people have been triaged incredibly quickly despite the COVID situ so it’s worth it anyway. So ask your GP for it.

I’m assuming you’re using respimat. It’ll be easier to send you the video demonstrating good technique rather than explaining so: asthma.org.uk/advice/inhale... (😅). Hopefully that’ll answer any technique questions you have.

Respimat is a mist inhaler instead of an mdi so it does work slightly differently.

Yes that’s a common side effect. And yes if after 3-6 months you’ve have 0 symptoms and 0 reliever use it may be possible to step down.

Hope this helps

[Celie1 in reply to EmmaF91]

Thank you Emma, you managed to answer everything in my complicated plea for help 😁. Thank you for the link I’ll have another look.

It’s a difficult one with the nurse saying what she did about the referral. Also I’m in a bit of a difficult position because I’m away from my usual GP who is in Yorkshire and am on an ‘extended ‘holiday’ living in a narrow boat currently lockdown in Cheshire. So the nurse I’ve been seeing during my recent asthma flare up is a temporary GP practice at the place I’m staying. I’m not sure, given my lack of permanence, whether she should be the one to make the referral or if I would need to contact my permanent GP practice 100 miles away in Yorkshire 😏. I don’t know how these things work. My thoughts were if she were to refer me - if she can with me not being a permanent patient 🤔- then I would be in the system and access the secondary care from wherever I happen to be. A tricky situation! Thanks for your support 😊

[twinkly29 in reply to Celie1]

Hmm that's an interesting one! If you're staying registered at your original place, it might be worth giving them a call and telling GP what AUK said on the back of what's been going on and seeing if they can refer you. Not sure how it works though as you may need to now be registered where you're living? (Not sure if the temp thing is time limited or not?)

[Celie1 in reply to twinkly29]

The ‘temporary’ is about two months. I had to temp register in Sept for first flair up, then again in Dec and again inFeb. So not sure how this would fit into the system. It does make it awkward but not impossible. We’re planning to move off again by June to make the most of the summer, but I can access medical care wherever I am. Maybe it’s a case of whoever holds the medical records, is the surgery responsible for referrals. I can only ask I suppose, but it does make me feel that I can’t be too pushy if you know what I mean. 😬 Thanks again 🤗

[twinkly29 in reply to Celie1]

I guess you could ask at your current place by way of "AUK have said this....just wondering how it works given my situation...." all nonchalant! But think you'd have to ask a GP as they would be the ones referring. Glad you've been able to keep re-registering though. I did it temporarily when I was moving here a few years ago but didn't pass the point of it running out so wasn't sure what happened at that point!

[Celie1 in reply to twinkly29]

Yes I’ll do that. I may mention, nonchalantly😆 when the nurse rings me in a couple of weeks to see how the Spiriva is going. I must say, apart from having to keep re registering, the practice has been really accommodating and the nurses have been way better than the one in my other practice who by the sounds of it should have referred me a couple of years ago. The support I’ve had from you and the other’s on the forum and AUK has kept me going and really helped me to become more informed, when I’ve felt I’ve been floundering. Also helped emotionally so thank you for all of that, 🙏🤗

[twinkly29]

What Emma said!

But just wanted to add that comments from medical staff brushing off referrals for that reason make me cross - you won't get seen ever if you're not on a list! And as Emma said, some people have been seen much quicker than expected. It's a dismissive thing anyway but more frustrating when someone (like you!) is doing everything they can, despite being anxious about changes (which, without wishing to sound patronising, you should be proud of!) and someone then says that.

I would do the GP route - request a phone appointment - and ask them/tell them what AUK said and that you tried asking the nurse but got that response.

[Celie1 in reply to twinkly29]

That’s nice, I really appreciate your support 😊. Yes I agree about the list thing, I’ll never get seen if I’m not on the list! 🤨but I added the complications I have geographically, on the reply to Emma, so potentially difficult to sort. I might need to phone my own GP, who is 100 miles away for them to put the wheels in motion, although, because the two practices don’t seem to have shared medical records, I don’t think my doc’s even know my medication has been changed! I don’t know why you have to sign to ‘share’ personal medical information and then they don’t even bother to share it, it doesn’t make sense to me! 🤦🏻‍♀️X