New diagnosis, working on getting meds right

[AirIsUnderrated]

I suspect this is likely to be a work-in-progress forever as the goalposts keep moving, but I thought I'd ask anyway.

I've been on Qvar 50 2 puffs twice a day since mid-May, and I finally got to actually see the respiratory nurse for the first time since March, and she's increased it to 3 puffs twice a day. I feel so much better! My boss told me today that I had my sparkle back - haha.

Now that I'm hardly needing the blue inhaler, when I do take it, the side effects are so much worse than they were when I was needing it most days. 2 puffs and I'm shaking inside and outside and I drop things, my brain switches off and I can't find the right words to say or even think straight. It gradually subsides over a couple of miserable hours. Is that normal?

The nurse wants to change me to a combination steroid and long-acting bronchodilator like Fostair - I'm not sure which she had in mind. But the GP mistakenly prescribed an extra Qvar inhaler 3 days after doing the last one, and I paid for it and picked it up from the pharmacy thinking it was my new Omeprazole, and now I can't take it back. I hate waste! But I'm going to ask for the new inhaler at my review next week.

The LABAs are a different drug to salbutamol, aren't they? Am I less likely to get the horrible trembling with a combination inhaler?

[twinkly29]

Some people do find they get the "salbutamol" reaction with the LABA bit but many don't especially when their bodies get used to it.

I think I'd mention the issue you've been having with the salbutamol/ventolin since needing it less often and your concern about a LABA - even if they say try it, at least you've flagged it.

I don't have ventolin but Bricanyl which is terbutaline, a dry powder reliever. It might be worth asking the nurse about this in comparison to ventolin as a reliever - I have no idea if it would be any better in terms of side effects though hence asking the nurse.

Are you using your reliever much? Just thinking if the Qvar has done the trick now it's increased, maybe the combi inhaler isn't needed. But of course if it can eliminate it further then obviously that's good.

Glad the Qvar has helped though - nice to be getting somewhere!

[AirIsUnderrated in reply to twinkly29]

Oh, SO nice! This has been going on for 4 months and it's the first breakthrough.

I had the Qvar dose increase a week ago and I've only needed salbutamol twice since: the day after the increase after 3 days without it, and at the weekend when I nipped into the super-hot conservatory to open a window, and forgot to hold my breath. I think I still need something. It's a lot better, but I'm not taking the blue inhaler when I probably should because of the side effects, and I'm still working out my triggers. If I have to do something important then I work better with a bit of chest tightness than the brain/body shakes. If I don't need to do anything important then I'll take it, but it's choosing the lesser of the evils.

Thank you 🥰. I'll ask about Bricanyl too. The nurse does know about the side effects, but I haven't told her how much worse it has got. I'll make sure I do.

[AirIsUnderrated in reply to twinkly29]

I forgot to ask, is it normal to experience increased side effects? I remember being shaky as a child when I had Ventolin, but I was on salbutamol tablets then as well, the ones that were discontinued. The shakiness seems worse the longer I've been taking it, rather than better. Or maybe it's short-acting and I have to get used to it every time?

[twinkly29 in reply to AirIsUnderrated]

I don't know - I don't usually get or notice side effects even though am on home nebs and my heart rate is constantly high - think it's just normal for me 🤦. But I'm glad you said that about salb tablets - when I was asthma-y 10 years ago before diagnosis I was given those at one point and had to lie down after 1 tablet, it was awful!

Maybe you are just noticing it more because it's less frequent? So there are ups and downs in different physical feelings rather than a constant. That makes more sense to me than it getting worse....but no idea if it's true. Hopefully a combi inhaler would mean the bronchodilator bit is an underlying constant too so you'd hardly need vent and go back to not noticing?!

[AirIsUnderrated in reply to twinkly29]

Yes, when I was on the tablets I remember trying to pluck my eyebrows and nearly poking an eye out! And even lying down only stops you doing damage. It doesn't stop the world from shaking around and inside you. Evil stuff.

I was always very aware of the trembling side effect of salbutamol from when I was put on it in April. It is definitely worse now. I told a respiratory nurse colleague that I was only taking 1 puff because that lessened the shaking but still gave me a little relief, and she told me off and said I should always take 2.

[nmcv13]

I notice you say you paid for the incorrectly prescribed inhaler; I’d highly recommend getting a prepaid prescription certificate, you save so much money!

services.nhsbsa.nhs.uk/buy-...

[AirIsUnderrated in reply to nmcv13]

Yes I did after that happened! Now I need to get my money’s worth! 😆