Well, that was a disaster...

[porthos06]

Sorry to post twice in one day 😆

I just had my asthma review (phone appointment) since changing from Relvar to Symbicort.

I told the nurse that the Symbicort had been working really well but I've had a flare-up in the past week and my asthma's been all over the place since getting a cold. I explained that I had to use a blue inhaler and spacer on two occasions because I genuinely couldn't get in enough breath to take Symbicort as a reliever.

The response I got was, "It's just the cold causing problems. I hope you feel better soon. If your PF gets below 50%, start taking your emergency course of oral steroids. Bye."

The whole appointment was over in five minutes.

My PF has *never* been below 50%, even when my dr has prescribed me oral steroids, and surely they can see that from my notes?

And obviously it's just the cold that's causing symptoms, but isn't a part of asthma treatment identifying triggers?!

Sorry for the rant, but I spend so much time worried that I'm being a hypochondriac whenever I have an asthma flare-up and this conversation just seemed to confirm my fears 😢

Any wise words would be gratefully received 😞

[lakelover]

I was told to double my Symbicort when I had a cold or even an increase in symptons, but I am on the smart regime & don't have a blue inhaler. Possibly you could ring your GP & ask him if that's OK, or if not what to do. Good luck.

[porthos06 in reply to lakelover]

Thank you for the reply 😀

Yes, I've been really increasing my Symbicort but can't get a deep enough breath to feel like I'm actually getting any in so I've had to take a reliever through a spacer.

It's got to be a design flaw to have a reliever inhaler as dry powder?! 🤔

[lakelover in reply to porthos06]

I understand what you mean, but a dry powder inhaler saved me. When I was diagnosed they put me on Ventolin & that made me much worse because of the propellant. They changed me to Bricanyl & I immediately improved.

[Bevvy]

Personally I don’t think the appointment was such a disaster. On the whole your medication is working and you are having problems/a blip due to a cold. Many surgeries don’t offer emergency meds these days so at least you have them. If you usually take steroids at earlier point then waiting, then do so. Just let doctor know and remember to ask for repeat prescription of steroids. If you feel that cold has turned into something else then take antibiotics if you also have them. If not don’t hesitate to contact gp.

I know what you mean about things being recorded in notes but to be fair it is difficult to “trawl through” lots of notes to find that information. Especially when patient is having appointment. You could have queried that advice at the time. My notes are long and extensive and I wouldn’t expect doctor or nurse to go through them. Indeed I would not be happy at them using my precious appointment time to do this.

When I needed a detailed report writing, they did go through my notes. Even commenting on diagnoses made 30yrs ago! So notes are important but have to be practical about when and where they are gone through.

[Wheesy in reply to Bevvy]

I suppose now that I complained to the surgry manager a few years ago that I am now being looked after much better with GPs saying "It is up to me not the NHS or surgery recommended time with a patients case as to when to descide when I have finished with my patient. I tell them exactly how I am feeling what medication I have taken and what works for me as an individual. My repeat presciption has Preds and coamoxyclav for me to order and I my chemist red lights all my medical needs and deliver of my medication to home very quickly.

[porthos06 in reply to Wheesy]

Thanks for your reply 😀

I did once complain about an out-of-hours dr who completely fobbed me off, but my GP practice is a little family-run surgery and I would feel uncomfortable about complaining.

I've made a decision not to take no for an answer in future. Or - more specifically - to keep asking questions until the nurse and I understand each other!

[porthos06 in reply to Bevvy]

Thanks for your reply 😀

Honestly, I think I was just a bit shellshocked to hear "ok, I hope you're feeling better soon" as a response from a healthcare professional when I was sharing my concerns.

I did manage to get an out-of-hours dr appointment yesterday as my resting heart rate had shot up to 132. Still no antibiotics as it's being caused by a virus but at least it gave me chance to have my concerns listened to 😀

[Lysistrata Administrator Community Ambassador in reply to Bevvy]

I agree about the notes - Porthos, you would need to mention re the 50% thing especially as that threshold for taking steroids often differs (even the standard advice before you get into individual plans). And peak flow guided treatment is not useful for everyone. I saw below you did have another appointment where you got to address these issues?

However, the appointment really needed to address the problems taking the inhaler when worse, as problems with the mechanics of taking inhalers/inhaler technique are a known cause of worse asthma outcomes. It's particularly bad when the inhaler is both preventer and reliever, but an inhaler you can't use when you're worse isn't a good fit even if it's fine when things are going ok.

I can't use dry powder relievers either and I also struggled with taking Symbicort as a preventer when getting worse, meaning I wasn't getting my dose in properly. I do much better on Fostair Nexthaler which is still dry powder, but more recent technology and much easier to take than Symbicort was. It doesn't suit everyone but given your problems with Symbicort Porthos, I would ask if you can look at changing inhaler, and perhaps not using the SMART regimen if you struggle with taking it when breathing is worse. Why did you switch from Relvar originally - could you go back to that?

[porthos06 in reply to Lysistrata]

Thank you for your reply 😀

That makes a lot of sense about moving off an inhaler which doesn't work right when you need it! Even after five days of prednisolone, I'm still struggling to get in enough Symbicort to feel like I'm actually getting any real value from taking it. I've completely given up on it as a reliever and have just returned to my good old-fashioned blue through a spacer.

The Relvar was great but I'd started having nighttime symptoms a little bit so I got moved onto the Symbicort since it's twice daily. The irony is that my asthma is now worse than it's been for years 🙄