Spiriva

[floating_]

My consultant said he'd like me to try this medication out as an add-on treatment, how do you find it if you're on it?

[twinkly29]

It's good. Really easy to use (the Respimat version), barely even needs effort to breath in, and is a long-acting medication. Lots of people find it really helps. It will need a good run (could even be 8-12 weeks for that one?) to test it out but definitely worth a go. No side effects that I've noticed.

[floating_ in reply to twinkly29]

That's good to hear! I dont think I'd be able to use the HandiHaler version. My hands are too dysfunctional due to another condition I have.

He did tell me to run it passed my other specialists, specifically my tertiary care allergist and tertiary care cardiologist. So won't start it just yet I don't think. But it's good to know it's helpful!

[twinkly29 in reply to floating_]

Just checked and it says 4-8 weeks to kick in fully - which is better than 12!

[floating_ in reply to twinkly29]

Thanks!

[Lysistrata Administrator Community Ambassador]

I'm on this and have found it pretty good with no side effects. I seem to notice if I miss it so it must be doing something!

I agree with Twinkly that it's pretty easy to breathe in! The one thing I would say is that if your hands don't work that well it may not be the easiest. It requires a bit of force to get the canister in for a new one (I bang it against a wall usually), and twisting can take some force/grip - I've made the mistake of putting hand lotion on before I take it in the past and then can't do it because of the slipperiness and force required! My hands are fine and sometimes I find I need to use a bit more force to get it to click round. (Obviously this is all my experience, not sure if others find the same).

There are other drugs in this class however (LAMAs) which may have easier devices for you, and it's definitely something to mention to your consultant as a consideration, if you haven't started it yet. Some inhalers have dummy versions used to test technique - you could perhaps ask if there's one of those for Spiriva Respimat or another Respimat you could try? (The device is used for several medications). Not sure if a pharmacist would have one; I know asthma nurses often do.

btw it sounds like your first consultant appt went well? Hope so - promising that the cons is considering your other conditions, I think they can forget sometimes!

[floating_ in reply to Lysistrata]

That's super promising, I really hope I'm able to get similar benefits!

I think I may ask the other pharmacy local to me, they had a dummy version of the Fostair NEXThaler, I tried it out, even got a NEXhaler to try out for a while, but int the end I went back to the pMDI because I struggle with holding my breath a lot due to neurological breathing dysfunction and difficulty getting the force needed to breath in. Hopefully the Respimat will be okay though. I've got devices I can use to turn the cartridge, so hopefully that won't be an issue. At the moment I use hard surfaces to dispense pMDI medication into the spacer which works for me. lol.

I will be seeing the teams Asthma Nurse relatively soon, and they'll probably be able to help me out! I can also ask my respiratory physio too I suppose??

It did! He had read up on a lot of my issues (I have a pretty complicated medical history and see a lot of specialists, some of my care is shared as well [e.g. I have three separate cardiologists at different hospitals to manage my heart related issues!]), so I was quite concerned he wouldn't be understanding, thankfully the fear was unfounded. I have to do some blood tests and a few other things, but overall was very good. He also suggested changing my nasal spray out to Dysmistia (sp?), so will see how that goes, and potentially adding a PPI, but said to run it past my GI doctor as I already take Famotidine and Nalcrom, both of which reduce stomach acid already, and doesn't want to mess with my GI issues as much as he can help it!

It's all very complicated! Hope you're doing well. 🙂

[Lysistrata Administrator Community Ambassador in reply to floating_]

Ah if you already have a device then it might be ok - but worth asking the asthma nurse definitely (and your physio if the nurse can't help).

Wow yes that sounds very complex, but kudos to the cons for doing the work to try and understand how it fits together and taking into account that you have other issues to consider! This is how it should be and too often isn't. (Because I know where you went and vaguely who the cons are, I'm trying to guess who it was/wasn't...obviously you won't want to say on here but I have an idea of who it probably *wasn't* lol).

I have heard Dymista is good though I'm not on it.

[floating_ in reply to Lysistrata]

Theoretically it could help, if neither of them have an idea, I can just run it past OT or PT, really depends, but shouldn't be too difficult. Fingers crossed anyway. You get pretty creative when you have difficulties anyway. lol.

Definitely yeah, I mean he had access to all my local consultants and some of the paperwork from tertiary, but if needed he can just ask for all my tertiary consultants adresses/emails (I can give them a couple if necessary, doesn't really matter which way it happens lol). I ended up not going to the hospital my GP mentioned, Royal Free isn't that local to me at all tbh, but this hospital is fairly close, and I don't name drop the close ones for paranoia reasons. However, he was very attentive and knew a lot/was willing to learn, and when you're pretty complex what more can you ask for really! Sucks that some of the consultants aren't so great there (at RF) after all, eek! I'm kind of surprised at how well it tbh, like in a good way, but as you say it more often than not isn't dealt with in a holistic way, which can be very harmful and completely unhelpful. It makes me concerned for people who aren't as fortunate as me to get a good appointment.

[Lysistrata Administrator Community Ambassador in reply to floating_]

Ah I thought you had gone to RF when you said local, but makes sense if it actually isn't that local. They like to think of themselves as good on asthma but I don't think they really have a major focus. I totally get not wanting to name drop, I won't say where I go either on here and makes sense if it's also showing where you live. I wouldn't anyway even though mine isn't my local, but tbh most of my experiences have not been great, including at my current tertiary centre, so I won't use names even of the trust!

I'm sorry you have so many complex medical issues but I'm quite jealous of this cons, don't suppose you could clone him for me lol? Willingness to learn would be a major improvement! And a vague appreciation that patients might actually have some idea about their bodies.

I feel there is rightly a concern that primary care for asthma in the UK can be very hit and miss and referral is often not done soon enough, but there doesn't seem to be much recognition that secondary/tertiary can vary too. If I even mention where I go I just get 'oh aren't they amazing?' Actually no, they aren't for me and at least two others. I've had better care from someone down the phone who has none of my notes (AUK nurses). And a more responsive approach from a customer service chatbot.

Sorry for the rant there...but very glad to hear you had a good appointment With all you have going on it must feel like a full time job at times to coordinate it, so it presumably helps when they do some of that!

[floating_ in reply to Lysistrata]

It's good to hear from the other side of the coin, if you get what I'm saying. That's totally fair too! I often do with tertiary, particularly for mast cell disorders because more often than not patients and their consultants don't think to refer them to the national referral centre at St. Thomas' (where I go for MCAS, it isn't local to me). Don't really understand why it's not brought up more as a centre, but I try to help anyway lol.

Thank you, it is pretty tiring to be honest but I manage lol. I totally would if I could! 😂 that's actually one of the main things I look for in consultants, the willingness to learn, obviously on the NHS it is sometimes down to luck though. I seem to have gotten lucky a lot. I think that the patient doctor relationship is so important, especially in long-term illnesses like asthma. We do live with ourselves 24/7 so we do know a lot!!

I think part of the issue with that is that the higher up you go specialist wise the lower the funding gets? So it's less focussed on? And if you have a complex presentation or you're atypical for whatever reason it makes it difficult too. Wish it wasn’t that way. Not sure how to change that either. Must be really distressing though. I've had bad run ins in the past so very much relate.

Totally rant away! As I said before if you ever do need to rant, drop me a message, I'll reply when I can!

Tell me about it. 😂 My main tertiary cardiologist has mostly taken over in terms of care coordination for some reason, although due to influx of patients he's referred me to a colleague (also tertiary) of his to have additional support for me, whilst I am still seen locally as well. My GP also does a lot, and I think it might've been a tad overwhelming for her when she said yes to being my GP (last year, just before I saw genetics!). Really grateful for her taking it on the chin. Not sure what I would've done otherwise.

But yeah, here if you ever need an ear.

[Chip_y2kuk]

Made a massive difference to Me

[floating_ in reply to Chip_y2kuk]

Good to hear!

[Doodles65]

It’s kept my asthma on the straight and narrow - well most of the time!

[angievere]

Spiriva really helped my asthma. Good luck with it.

[achyknitter]

I started using this in February and it has been a lifesaver. It does take a few weeks to work fully but I noticed a difference from the start. I have not been aware of any side effects. Hope it works for you and you are soon feeling better.

[Dino40]

I started on Sprivia in April and I think it's been the last couple of weeks it's made a difference, so 8-9 weeks to kick in. I did seem to need less ventolin. (Well until the next tapering in my steriods had to be done)

I can't manage to get the canister in at the beginning (I've got other conditions that affect my joints) so have to ask someone else to but I believe some pharmacists will do it for you if you ask..

Brilliant you've got such a great team of Consultants as Twinkly said. Very rare find these days 😉

[floating_ in reply to Dino40]

I'd like to need less Ventolin, like I currently use it multiple times a day! Heart rate isn't too appreciative of it. Haha. Hopefully I won't need the PRN Fostair puffs either (on 200/6, 2 puffs twice a day, plus 2 PRN). We will see!

My mum has said if needed she will help me out with it. So hopefully it will be okay.

Yeah! Very lucky. 😳

Hope you're doing well.

[juneflo53]

I've been on Spiriva for 4 weeks now and it has made a difference. I'm able to do a lot more and haven't needed my blue inhaler at all. As you mention your ability to use your hands, the one I have is fiddly. There are capsules which have to be released from the pack in a certain way - very fiddly, then put into device. From there on it's fine, a click to pierce capsule and breathe. But the capsules need to be used within a short time frame so it's not like someone could prepare it for you. Hope that helps.

[Bwv945]

I’ve found this very helpful once it kicked in. Good luck x

[Evesham]

I’ve found it very effective and have been taking it for a few years. Re opening it where there is a will there is a way. I broke my wrist so I put the canister under my chin to twist it!

[Marydoll589]

I’ve used it for a number of years, but lately started to notice side effects like sleeplessness even though I’m dead tired. Also my lips go really dry. I reduced it down to one puff and take it about 8pm if I remember without any noticeable deterioration. Would like to go completely without it to see how I fair. I take a few supplements these days that help my asthma so would like to get off one med if I can.

[Naomi_ALUK Partner Asthma Nurse in reply to Marydoll589]

Sounds like you could do with a chat with your asthma nurse - it may be something else causing your sleeplessness? As ever, check with your HCP before you stop any medications so you stay safe 🤗

[HungryHufflepuff in reply to Marydoll589]

Can I ask why you take yours in the evening? I wasn’t given any indication when to take the Spiriva but I take it in the morning directly after my other inhaler. I do take an inhaler in the evening but try to remember to take it around 6 or 7pm.

[Marydoll589 in reply to HungryHufflepuff]

That was what I was advised to do when prescribed it. Two puffs in evening. I take relvar in the am.

[floating_]

Thanks guys for your responses! Fingers crossed I'll benefit similarly. 😀

[Itswonderful]

I have had excellent outcomes with this medication. Hope it suits you too.

[Celie1]

Hi, I was given Spiriva during an exacerbation in March (I think it was 🤔.)I didn’t notice any side effects, although I was feeling pretty bad generally.

I didn’t really notice any improvement, but stayed on it.

I was given an add on of Montelukast and recently an antibiotic 3 times a week. Finally I’m off the pred and I can breathe! 😄. Not sure which one did the trick or if it’s the combination. Like Lystrata I might notice if I didn’t take it 😳.

Hope it works for you 🤞

[Lysistrata Administrator Community Ambassador in reply to Celie1]

Yes it was odd - I was sure it wasn't helping, so I wasn't that bothered when my GP surgery messed up the prescription and I knew I'd miss a couple of days at least. (I say this because I don't want anyone reading to try stopping meds by themselves as an experiment - I've only done it by mistake or temporarily for tests).

But I definitely noticed the lack of it and realised it had been working away - it just wasn't dramatic or sudden. This is in contrast to Symbicort which semi worked for a few weeks, then one day it was "oohh...this is really helping!'

[Celie1 in reply to Lysistrata]

Yes that’s odd, it must have a slow effect. I found Symbicort good for me too, although the doctor changed it to Duoresp Spiromax, which I think is the same only cheaper!

[hilary39]

It helps me a lot as an add-on

[Gilly100]

Absolutely fine!