Stopping Spiriva

Hi everyone I hoping someone has some advice! At my last asthma review last year I was told to reduce my inhalers ( stop Spiriva but continue with ventolin & to drop down to 1 puff instead of 2 puffs twice a os symbicort) she said, because my asthma was stable and no infections or problems. It has taken years for it to stablise and have my life back! Within 10 days I was stuggling to breath & walk and was back at the drs with a chest infection & put straight back on Spiriva and back to two puffs of symbicort and antibiotics. I’m seeing the asthma nurse again soon 12th July and I just know she’s going to want to take me off it again 🙁 what do I say? Im walking 3-5 miles again I’m losing weight I feel so much better I’m dreading it. Sorry for going on.

[Lysistrata Administrator Community Ambassador]

I think you need to point out that you tried going off it and it was clear that your asthma was stable *because* of the medications and you do need them! I get that it's good to be on the lowest dose you have control with, but that's definitely not the lowest dose possible regardless of symptoms!

Not everyone can or should step down for the sake of it, and if she's thinking about costs - which shouldn't be the first thought - you can always point out that uncontrolled asthma will cost much more.

If she gets stubborn perhaps you could ask to see the GP instead? Could also look on the AUK website and/or call the nurses before so you go in armed with information. I suspect this nurse is not necessarily up on when or how to step down - 2 meds at once doesn't seem ideal for a start, she should probably at least have tried one at a time, or suggested a trial of lower dose Symbicort first.

[Hidden in reply to Lysistrata]

HI thank you for the reply. You made some very good points! They weren’t all started at the same time they were added as symptoms we not improving at the time. But she advised me last year to just stop the Spiriva, I questioned this and really didn’t want to stop and explained how I’d not been so healthy for many years she still said I didn’t need it now and research has shown high doses do not help and she said it was fine to just stop. She is the asthma manager.

[Lysistrata Administrator Community Ambassador in reply to Hidden]

Sorry if not clear - I meant she shouldn't have stepped down Spiriva and Symbicort at once! How are you meant to work out what is helping that way, even if stepping down were reasonable?

I've received terrible advice with no evidence base from doctors who were supposedly asthma specialists, so am very sceptical about titles - in my mind bad advice is bad advice. I am pretty confused about her high doses of Spiriva comment - presumably you were taking the usual dose? Which has been shown to have benefit in clinical trials in at least some people with asthma or it would not have been approved for use in asthma. Ok, people do use, and doctors are allowed to prescribe, drugs for conditions they aren't formally approved for (and they can help) but Spiriva Respimat *is* approved for asthma!

[hypercat54]

Hi you say 'No' very loudly and insistently if she tries to do this again. If she then persists you go straight to a doctor and tell them. I am glad you are feeling so much better now. x

[Doodles65]

I was told to cut down my inhalers about 2 years ago. Since then I’ve had an awful time trying to get it back under control and am now on higher doses and more medication than before. Coincidence? Do t think so! If it ain’t broke don’t mend it! Hope they listen to you.

[Chip_y2kuk]

Tell her no and then tell her why.... the aim of asthma management is maximum control on minimum medicine... you've clearly found your minimum

Your asthma nurse is following the "stepwise"asthma management (which they all do) you can find the guidelines online and it does say to "try" stepping down once control is managed and maintained "if appropriate/possible"... you tried it and it's not sustainable

The bad advice some asthma nurses/doctors give out baffles me... I take it she didn't tell you to "step up" if your symptoms came back?

[ChrissieMons]

Well, you don't actually know what she is going to say till you've seen her. I suggest you take a pad and pen with you and write down her advice, checking with her that you have it straight. Tell her you are quite anxious about the change in dosage and if you are still not happy with her advice, make an appointment to see your GP.