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theophylline advice

Thompson_2009 profile image
10 Replies

Hi

Has anyone been prescribed theophylline and did it work and any side effects which the doctor warned me could occur.

Thanks

Paul.

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Thompson_2009 profile image
Thompson_2009
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10 Replies
EmmaF91 profile image
EmmaF91Community Ambassador

I used to be on it. Worked great whilst therapeutic (takes a few days to build so imagine you’ve been told to go for BT in about 5 days from starting). Unfortunately I’m an oddity, as I could be therapeutic, untherapeutic and toxic all on the same dose 🤦‍♀️. I got quite toxic but at worst the side effects were mainly severe headache, nausea/sickness, extreme tremors (one person commented I looked like I was having seizures 😅) and tachycardia. It got stopped long term due to my inability to keep my levels stable and i was constantly tachy with frequent palps, but it was game changing for me when it was working!

I hope that helps and that Theo works well for you.

twinkly29 profile image
twinkly29

I'm on it. I've only ever had side effects when the level was too high - I'd been on the same dose for years and had gradually lost a bit of weight so when that coincided with a virus it pushed me toward/slightly over the range. But normally I have no side effects at all with the oral version and levels stay pretty stable.

Thompson_2009 profile image
Thompson_2009 in reply totwinkly29

Hi thanks

What dosage are you on, I am still trying to get mine prescribed by the gp they say the dosage prescribed does not exist.

twinkly29 profile image
twinkly29 in reply toThompson_2009

Oh how odd!

I'm currently on 300mg twice a day of Uniphyllin. Started on 200mg twice a day, up to 300 then 400 twice a day. Then back to 300. I'm sure a friend is on like 400mg in the morning and 300mg at night or something, but definitely different doses.

K8ty25 profile image
K8ty25

Very similar experience to EmmaF. I couldn't find a dose that was stable enough for me to take all the time. My main side effects where crippling headacheas. I still get theophylline. However I get it when I am admitted to hospital through an IV. This means they can monitor me very closely and make sure my blood tests remain stable.

GarryS profile image
GarryS

I was prescribed it some years back. I didn't experience any side effects. Not sure it made any difference. Was told it was an old drug.

Wheezy1980 profile image
Wheezy1980

Hi, I've been on theophyline for around 8 years, it helped immensely as part of my treatment plan. I haven't had any side effects. It just made a massive difference in controlling my asthma, it's all about balance, and finding put what works for you. I hope this makes a positive difference for your asthma. I also asked for my inhalers to be changed, I dont know if this is something maybe to consider aswell as the theophyline. You will need a blood test to check your levels when you start taking them to make sure your on the correct dose. Hope this has helped.

Autie1 profile image
Autie1

Im on it and have been for years. I got really bad side effects even on the lowest normally prescribed dose and my levels were too high so i only take it once a day now and even now i still especially of im ill with a virus get side effects especially vomiting from it thankfully only for a couple of days. It works brilliant for me thou.

MacColl profile image
MacColl

Because so many of the other drugs for asthma were causing side effects or not controlling it well enough, I asked the asthma nurse if she'd get the GP to prescribe theophylline (Uniphyllin) for me.

He started me on 2x200mg doses per day.

I'm prone to side effects, so prefer to take dosage slowly, starting on just 1x200mg tablet per day. These did give me the expected side effects of nausea and headaches, but I persevered, and gradually it wore off (within a week), and I stepped the dose up to 2x200mg tablets 12 hours apart, and got through the side effects again.

The doses were then increased to 1x300mg and 1x200mg until I was used to the extra, and then 2x400mg 12 hours apart.

It does make a noticeable difference, and for some time I was on 2x400mg per day, but I asked to take a lower dose at night as I never get troubled by asthma while sleeping.

I've settled on 1x400mg for daytime and 1x200mg for the night hours.

Alongside my inhalers, it works well for me, and although a hospital pharmacist was troubled by the dose not being even, did admit that if it works well for me, then it's fine.

I'd backed up my argument with the statement on this page:

bnf.nice.org.uk/clinical-me...

Thompson_2009 profile image
Thompson_2009

Well i went on the medication and it was awful, the side effects where really bad and i have been told to stop taking it. They said they are trying biological treatment next, will have to see if that makes any difference as nothing is working at the moment. I have no life.

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