anyone else getting repeat pressure to lower your dose

[Lemonade91]

I wrote here previously about my issues with the asthma nurse at my surgery. After a big drama I was changed to lufrobec. It gives me a bit of a cough but nothing like the side effects I experienced on fobumix.

I have been taking it around a month, two weeks ago I had a call from the pharmacist at my pharmacy, we chatted through my previous medication (clenil 200mg x2 puffs morning and evening, Serevent 25mg x2 puffs morning and evening and whatever brand of blue inhaler the NHS favoured at the time as a reliever). She checked the doses and said that the 100/6 lufrobec is the equivalent of what I used to take but I need to take two puffs morning and night rather than one.

Had the four week checkup with a nurse at the GP practice yesterday, and I told her about the upped dose, she said that I can take upto 8 puffs of the lufrobec each day so if I’m take four I need to be careful as that only leaves me with four. I was like okayyyy well I can count and I don’t need to use the reliever for day to day activities when my asthma is well controlled. We talked about the fact that I DO use it when I exercise and I have trouble getting through exercise without needing it which has been a continual problem. I have not needed more than two puffs and one is usually enough.

She told me to keep going with two puffs morning and evening and hopefully in a few weeks it’ll be fully in my system and then we can look to dropping it back down to one puff for the mainaince

am I just not understanding how the MART process is supposed to work? Why do the nurses keep talking about wanting to drop the dose? I don’t think it’ll work I think I’ll be in the same situation where in the middle of the day and night I need to take an additional puff when just doing regular daily activities

[Troilus]

Bi Lemonade. I was pressurised into dropping my dose of Fostair from 200/6 2x daily to 100/6 2x daily “like everyone else” - this was in the hospital clinic when my asthma was doing well. Two courses of prednisone later I was put back on it.

I now have a Fostair 200/6 and a Fostair 100/6 (from the hospital clinic) so that I can go higher or lower depending on my peak flow which was like a rollercoaster with seasonal responses.

I think that if you find an asthma nurse who recognises you as an intelligent responsible human being, then you are onto a winner. However in my experience too many of them think they know more than us, that we are not clever enough to understand our condition and not responsible enough to manage it appropriately.

My advice would be to keep a record of your peak flow - graph it out - if it’s numbers some nurses will just give it a cursory glance. Along side it note what extra meds you take and any symptoms. This will help you argue your point.

Hopefully the 6 a day will work for you.

[Lemonade91 in reply to Troilus]

I had loads of problems with my surgeries asthma nurse so I switched to a different nurse and she’s telling me the same thing so I wonder if they’ve had some training that’s impacted the advise they’re giving.

The pharmacy have given much better advise and seem to understand the medication better than the nurses do. I really had to fight the surgery to take my off the powder inhalers and switch back to the aerosol.

I moved to keeping my peak flow on an app because they seem to take that more seriously than when I was doing it on paper. My peak flow isn’t great (to be fair it never really has been) but they’re a lot less interested in it than previous asthma nurses I’ve seen who have always been concerned I struggle to get upto 400.

It’ll proberbly take several deaths before they do something if there’s some stupid imitative behind all this.

[Homely2 Administrator]

It really helps if you have a good asthma nurse.

I use fostair on a Mart system, so up to eight doses a day, with one fixed in the morning and one fixed in the evening, leaving six when I need them.

However I can organise it as I like, so if I want to be two fixed in the morning and two in the evening, with four spare, that is fine.

The asthma nurse will then chat it through when I see her, as to how much should be fixed, and how much spare.

If you need a chat ring asthma UK on 0300 2225800, office hours, they are great.