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Children's health

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salbutomol - does anyone else find it extremely unpleasant and unsettling?

35 replies

usernamefromhell · 17/12/2018 22:31

My DD (8) has suspected asthma (occasional very severe respiratory reactions to viral infections, not atopic and totally asymptomatic other than following a cold, thus has been very difficult to get a diagnosis). She takes salbutamol when she has flare-ups, on doctor's orders.

She was admitted over the weekend following an episode and discharged yesterday with prednisolone and ordered to taper down from 10 puffs of salbutamol every four hours.

Have now tapered down to 8 every four hours.

I'm following medical advice but I can't stand the effect it has on her -- its not only the hyperactivity and jitteriness but her personality seems to change on it, she becomes almost aggressively hyperactive and moans in her sleep for hours and hours in a way which is quite distressing after she's had it. I've read up on it and I know its a life-saving drug which is effective if used properly but I can't help feeling that if used outside of an acute episode it actually makes things worse.

Has anyone else had this experience? I don't want to ignore medical advice but all my instincts are screaming at me not to use it -- I hate it.

OP posts:
flamingofridays · 17/12/2018 22:33

Ooh strange. Ive taken salbutamol my whole life and never felt any different after (other than being able to breathe!)

Ds had it for a short stint when he was 1 and i never noticed any of this with him either.

Could you request an asthma review? They maybe able to advise on this!

Hope you get some answers as it does sound somewhat unusual!

MovingtoLondonAgain · 17/12/2018 22:35

Both my kids use it, have never noticed what you describe. Have you been given a preventer?

flamingofridays · 17/12/2018 22:37

Also 8 puffs in one go?!

I have only ever been told to do 2 at a time even when at my worst with full blown chest infections and on steroids.

VimFuego101 · 17/12/2018 22:38

Salbutamol at high doses can make you hyper. I agree that she should be on a preventative steroid to try and minimise the salbutamol and prednisone usage -I believe you're not meant to take pred more than a couple of times a year. Does your surgery have an asthma clinic you could get referred to?

usernamefromhell · 17/12/2018 22:38

flamingo she's having ongoing investigations for the condition so being reviewed all the time -- its still unclear if it is even asthma as its not atopic and non-atopic asthma is quite rare in children but all the other obvious conditions have been ruled out. There are various other things being tried but all the doctors I've seen have said salbutamol should be used during and after an acute episode (she doesn't use it at all when she's well).

I wondered if it might be related to the fact that she's non-atopic but maybe have to live with the fact that it has these weird side-effects. .

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usernamefromhell · 17/12/2018 22:40

Thanks all: yes she's on a preventer as well (beclomethasone). She's being reviewed constantly all the time, consultants, asthma clinics, different specialists, GPs etc.

Just to clarify the 8 puffs is an exercise in tapering off from an acute episode, she doesn't usually take it at all. I'm not giving her 8 puffs on a daily basis.

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Ba3103 · 17/12/2018 22:41

My 3 year old has exactly the same thing was admitted Friday for the 3rd time in 6 months with steroids nebulizer and 10 puffs every hour just to get his breathing under control now back home he has the weaning off schedule he now on day 4 with 4 puffs every 6 hours .. I don't think it's has any of those affects on him though x

flamingofridays · 17/12/2018 22:42

Theyre right it should be used however that seems like a massive dose. If she needs that high a dose im surprised they dont have her own a preventative inhaler as well.
Athsma is v hard to diagnose in children so they told me when ds was having issues.

Have you mentioned the side effects at her appointments?

WoahBodyforrrm · 17/12/2018 22:43

Yes my son gets this. He’s 11 now and was diagnosed very young. He goes really jittery on it, I can sometimes see his heart racing. His constantly moves his legs and talks ten to the dozen. When he finally falls asleep he’s unsettled, tossing and turning and making lots of noise.

The more salbutamol he has, the more extreme it is. So when we do the weaning down process from 10 puffs down to 2 over X amount of days, he gradually gets better.

Size7feet · 17/12/2018 22:44

Is she still in the prednisone? If she is then that is possibly what is making her unsettled.

Dauphinois · 17/12/2018 22:44

It does sound like she's very sensitive to it. My kids can get the shakes / jittery after high doses like you describe but it doesn't disturb their sleep or appear to alter their mood that much, apart from making them hyper.

It's so effective at what it does that you may just have to live with the side effects, but I guess it's worth asking if there's an alternative at your next appt.

ThoughtForFood · 17/12/2018 22:45

It is much more likely that it’s the prednisolone that is making her hyper. Salbutamol can indeed cause some jitteriness but that will decrease as you manage to taper down her dose. The prednisolone hyperactivity will go soon after she finishes her short course.

It’s tough getting through an exacerbation of asthma, you have my sympathy, but it’s incredible that we have these genuinely life-saving drugs and I’m sure she will be bouncing back very quickly. All the best. FlowersCakeBrewBrewBrew

BigBairyHollocks · 17/12/2018 22:45

That’s a normal dose after an episode.However the symptoms you describe are in my experience more linked to the pred,are you sure it’s the subutamol?

flamingofridays · 17/12/2018 22:46

Cross post!

Hmm it is strange. If shes on a preventer as well and still having episodes im not entirely sure what the next step would be. (My athsma was at its worst when i was v small so i dont remember what other treatment i had!)

You could ask if there is any alternative? Ive never had to look into this as salbutamol has always agreed with me.

ShesABelter · 17/12/2018 22:46

No my five year old son doesn't have either of those reactions. Although over taking it can cause hyperactivity and shakiness. I have never seen or heard of anyone's personality change and my family is over run with asthmatics.

HundredMilesAnHour · 17/12/2018 22:46

8 puffs is a massive dose so no wonder she gets those sort of side effects. As an adult, I've taken 4-5 puffs under the supervision of a nurse and it was like I'd had 3 double espressos. I was very jittery but obviously it wore off.

It sounds like they're doing everything they can to find out what the problem is and help her manage it so I think you just have to suck it up for the moment.

ThoughtForFood · 17/12/2018 22:46

Sleep disturbance is v common with prednisolone as well, so get her to take it as early in the morning as you can. Also, she may eat you out of house and home!

BigBairyHollocks · 17/12/2018 22:47

X post with Food.I think it’s the predisolone,my kids and I would all have had reactions like that to it.Horrible but miraculous drug.

katseyes7 · 17/12/2018 22:47

When l was first diagnosed with asthma, l was given salbutamol tablets. They gave me the shakes and l felt really jittery. Once l had the inhaler though, l was fine. l think some of the other posters could be right - it may be the prednisolone. Could you maybe speak to your pharmacist if you can't see a doctor straight away?

ivykaty44 · 17/12/2018 22:48

The steroids can make you hyper, I have been warned and take them early in the day for this reason

usernamefromhell · 17/12/2018 22:50

size7 yes she had her last dose of prednisolone this morning so still in her system. I know that's also associated with some of these symptoms.

It is a very high dose, she was admitted to hospital over the weekend and on a nebuliser, they are tapering down from this. This isn't standard at all -- it happens maximum 2-3 times a year.

thoughtforfood yes you're right -- I feel incredibly grateful that we have medicines like this, with all their downsides. She's probably alive as a result of these. If this is the price to pay, so be it.

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brownmoose · 17/12/2018 22:51

I don't think it's the salbutamol doing it, it's the prednisolone. It's a steroid.

I found my son acted like he was high on drugs and then would have a massive come down.

brownmoose · 17/12/2018 22:53

As a side, the high dosage is also totally normal during the flare as well. We often increase during episodes until we can get it back under control again.

I'm pretty sure the rule we've always been told is max 10 puffs in an hour, looking to reduce. If the hour can't be made with 10 puffs then an intervention is needed.

usernamefromhell · 17/12/2018 22:55

You may all be right about the prednisolone: I am always uneasy about that as well for obvious reasons although again its a life-saver.
Thanks all, for your advice.

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Tony2 · 17/12/2018 22:58

Salbutamol; Wikipedia. Common side effects,headache, fast heart rate, dizziness and feeling anxious. It is an adrenergic receptor agonist, so it effectively mimics ( to some extent) adrenaline. I'd discuss it with the Doc.