I've just been prescribed Spiriva (for breathlessness due to obliterative bronchiolitis) and wonder how others find it?

[EmmyH]

When do people usually take it and do you take it with other inhaled meds (like salbutamol/ventolin and seretide, in my case)?

[valm]

I have been on it for a good while now, found it helped with my breathing straight away. Val

[Gidge]

My husband (pulmonary fibrosis) has recently started on Spiriva, he also has Seretide 250 and Ventolin inhalers. We were recently advised that he should use his Ventolin on getting up, then use the others after breakfast. Hope this helps! he also uses the Ventolin 3 more times a day, also Seretide at night, although I have to say they don't seem to make a lot of difference. He will be having an assessment for oxygen next week.

[amagran in reply to Gidge]

richard takes ventolin, then seretide, then spiriva whilst still in bed, another 2 puffs of ventolin 4 + times a day, seretide again at night.

He also has ipf and copd and is on oxygen.

[Perce]

I use the Spiriva inhalator and at lunch time every day I have two puffs of Ventolin and a few minutes later the two puffs of Spiriva, I find this spreads out the meds over the day.

[Mmike110]

"spiriva" works for 24 hours and I was told it makes little when I take it, but that's just me! I take mine before bed.

I found it worked well for about a year but then had little effect. I'm now on oxygen.

Hope that helps.

Mike

[Lynne1955]

I have moderate COPD and have been on Spiriva for one month. It has been wonderful although for the first 2 weeks I did have side effects, but they have now stopped. So you might need to persevere.

I take it every morning about 7.30 and haven't used my ventolin since I started it.

Lynne x

[Quinny11 in reply to Lynne1955]

What were your side effects ?

[EmmyH]

Thanks everyone for those very helpful answers . I already nebulise ventolin every morning (and sometimes evening), also hypertonic saline before lung clearance physio (I have bronchiectasis as well as OB), and seretide inhaler morning and evening, so I was wondering when to fit yet another treatment in!

It's really useful to get an idea of how others manage a routine. Thanks again.

[TomK]

Ventolin first thing to kick start the lungs. About 20 minutes later Spiriva and about 10 minutes after Symbicort. Works for me.

[EmmyH in reply to TomK]

Sounds good to me - especially the 'kick start' bit! For symbicort read seretide, in my case.

[frose]

Ventolin (sometimes nebulised) first thing, shortly followed by Spiriva nd Symbicort; ventolin all flipping day and then symbicort and ventolin (sometimes nebulised) at bed time.

[nannie63 in reply to frose]

Your routine / management is identical to mine apart from l also take Qvar twice a day. I continuously almost run out of ventolin and have a couple of times. I hate that i have to argue for more. i have 3 a month. After a year and a half l feel l have found a way of 'living with a lung condition'. My GP tells me to use what l need but l am fed up being confronted / questioned by chemists etc; l am looking into purchasing some spares. Nothing worse at the end of the day when you're tired and breathless, gone to toilet and left your inhaler downstairs. Want to make sure l can look after me so l can continue to look after / be with my family. Hope this all makes sense ...do waffle sometimes hehe, T/C Marilyn x

[EmmyH in reply to nannie63]

Hey - you shouldn't have to purchase any spares! Luckily, at my rural GP's surgery, there is also a dispensary. They don't always have what I need in stock but can get it by the afternoon or next day and I never have to argue for anything (even though I usually take home a carrier bag full of drugs!).

Btw what is Qvar?

[EmmyH in reply to frose]

Where would we be without ventolin, eh? (Strictly rhetorical question.)

[nannie63]

Hi emmy,

Stick with it, plays with times (making sure you leave the right time between doses ) till you get it right for you. For example l take my second dose of symbicort just as l go to bed. This has enabled me to sleep 3-4 hrs straight, otherwise up & down all night. T/C Marilyn x

[EmmyH in reply to nannie63]

I sympathise: keep waking self and other half with coughing at the mo. x

[frose]

Marilyn,

I found it helpful once in a blue moon to 'lose' my inhaler therefore needing a replacement ... which went instantly into my car! I'm also on 3 per prescription but I'm probably prescribed slightly more than once a month. My GP is fine with it but, like you, the chemist sometimes expresses concern!

[nannie63 in reply to frose]

Thanks Struggle will try the 'I've my inhaler' , perhaps i wont get the third degree next time. Take care. Marilyn x

[libbygood]

I wish all the top lung specialists would have a conference and decide which first - Spiriva or Ventolin. I have been told varying sequences by different resp. nurses. I tend to change my sequence at the moment I'm having Spiriva first and ventolin half an hour later followed by Seretide, but it seems most of you take Ventolin first. We've had this discussion on this forum so many times, and nobody seems really sure.

Libby

[EmmyH in reply to libbygood]

Think I might check order with consultant next week. This morning I was full of guck on waking (sorry folks!), tried ventolin (nebulised), seretide 20 mins later, and spiriva (first time) after breakfast. So far, so good. Suppose I'd better go and do my hpt saline now, but feel much more comfortable and was able to go out and do shopping this morning without clearing lungs first. Hope this is promising...

[Hidden]

I take Spiriva at night - seems better sleep than if I take it in morning.

Auntymary

[EmmyH in reply to Hidden]

That's an idea. Trial and error to see what works best for each of us, I suppose!

[william777]

I take my Spiriva in the mornings after ventolin, but after 30 minutes i go for shave and gasping for air. i amalso on Symbicort but use my ventolin 4 times or more a day somthing is wrong because my throat burns up and my voice changes.

[EmmyH in reply to william777]

That doesn't sound too good. Have you checked it out with the medics?

[william777 in reply to EmmyH]

i have appointment next week with copd nurse will let you know how it went

[iamu]

I am on spiriva too for bronchiolitis obliterans...... you are the first person I have come across with same diagnosis ...........

Hope you are coping. x

[EmmyH in reply to iamu]

That's interesting! I haven't come across anyone else, either. Looking on the internet, it seems to be mostly children...

For me OB seems to have come on after bronchiectasis, many chest infections, and after recovering from pseudomonas infection. (One thing after another!)

How are you coping and does Spiriva help?

[iamu]

I had respiratory chlamydia which obliterated my lungs. That was 10 years ago when my youngest was 1years old . Been a journey......

Spiriva does help.

Whats happening with you ?

Are you on continuous oxygen ?Do your sats hlod up?

I have been on and off transplant list.

Considering again at mo.

I take azithromycin 250mg 3x a week which is helpful. Treatment of choice for adult cystic fibrosis patients. It is an antibiotic with an anti-inflammatory response.

Great to have touched base with you.

xx

[EmmyH in reply to iamu]

It never ceases to amaze me how many different things can affect our lungs. It must have been 'a journey' - poor you. My youngest is about the same age as yours and I'm glad he can remember when mum could run around and race him.

My problems started 4 years ago but I wasn't diagnosed with bronchiectasis until 3 years ago. It's mild-ish but extensive and it's crazy how something supposedly 'mild-ish' can take over your life so much. I am fortunate though that my sats are fine and I don't need oxygen (except when I was struggling with pseudomonas in hospital). But increasing breathlessness led to additional diagnosis of obliterative bronchiolitis just 3 months ago and I'm still getting used to the idea and trying to find out how to keep well and not get worse.

Azithromycin, in my opinion, is wonderful! Back in 2010 I had pneumonia (twice), haemophilus, swine flu, and pseudomonas, plus several unientified infections. Since taking azithromycin I am down to two exacerbations a year - huge improvement.

I wish you all the best. xxx

[Nancygirl]

I use Spiriva once a day, in the morning when I get up. I take three, deep as I can, breaths and hold them as long as I can. I do this every morning and I find it a great help with my shortness of breath. At first I had a very dry mouth but not any more I put that down to drinking a lot during the day, water that is, Also I have my puffer just incase I get extra breathless during the day, both work well together. Hope this answers you question.

[EmmyH in reply to Nancygirl]

Thanks. I've been using Spiriva (in the morning after ventolin and seretide) for just 3 days now and it seems to be helping already..... fingers crossed. I'm less tight chested, with better peak flows, and have some more energy I think. Optimistic.

[Nancygirl in reply to EmmyH]

Yes I am finding that I have more energy since I have been using Spiriva. long may it last, also like I said my breathing is a lot better since I have been on it One thing is though sometimes you can come across an empty capsule that dose not rattle when you breath in so keep a check and look out for it so far I have only had it happen to me twice so far in the year that I have been on it. Keep well x

[Michele-Cat in reply to Nancygirl]

The respiratory nurses advised me to rinse my mouth after using Spiriva, so I use it just before I brush my teeth in the morning.

[dustbunny]

I take it with Symbacort and something called Q-Var, so yes, you can mix it with the others, I just line them up and take them all in a row. Seems like a lot, but each drug does something different. It works well for me; it makes it easier to cough out the bad junk in my lungs, as it is for just that reason.