Aminophylline experience

[conmac]

Hi,

Has anyone been taking aminophylline for asthma. I would be interested in hearing your experience with this drug and any positive results.

[Hidden]

I take theophylline! Had good results when put on ammynophyline infusion during attacks in hospital so my consultant thought it might make a difference to my day to day symptoms. It definitely helps. The first few weeks I suffered from headaches but that settled and I wouldn't come off it now! Just have to get regular blood tests as the levels can go between thereputic and toxic quite easily. If you want any more specific info, feel free to PM me!

[conmac in reply to Hidden]

I've been taking seretide which really helps keep my airway open for long periods but it makes my voice hoarse.

[DeanSamson in reply to conmac]

I was having the exact same thing for months. Untill I gargle with salt water after every two doses. This has made a huge difference to me.

[Yatzy in reply to DeanSamson]

Me too! Though just use plain water these days.

[Lysistrata Administrator Community Ambassador]

I've been on Phyllocontin (extended release aminophylline) for about 5 years now and like it. My consultant doesn't, but he seems to think everyone gets nasty side effects - my impression is you either do, or you don't, and if it works for you without side effects then it can be good. I asked if it could be somehow damaging long term without me noticing, and the drs at my asthma clinic pretty much said well no, you'd notice if you got the side effects. They did point out my heart rate was a bit high at the time but I said yes that's not the Phyllocontin - I use the Samsung Health app and my heart rate is well behaved unless I am having asthma issues (which I probably was then as I had rushed to get to the appt).

It took me a bit of time to get the hang of it to start with because I was meant to gradually increase the dose but hadn't had clear instructions, and I was really worried about the side effects, but I have always been fine with it. It's not a miracle drug and my asthma is still a bit rubbish but then it is anyway. I certainly notice if I miss a dose so it's helping and I have fought to stay on it because of this.

It seems to be a bit of a Marmite drug for both drs and patients, but worth a go! Don't let anyone tell you it's no good because it's old, or because some people can't tolerate it - if it works for you, it can be good and you just need to keep an eye on the levels.I am careful to take it about 12 hours apart - sometimes when I am admitted they want to give me another dose about 6 hours after the last one because that's when they're doing the drug rounds, and I have to be firm and say no, I will take this later. If I didn't know that, I might overdose - they are not often familiar with it.

[conmac in reply to Lysistrata]

Thank you for the informative reply. I'm lucky enough to be able to exercise and run short distances. I would relish the opportunity to reduce reliance on the inhalers but accept that they may be something I'll have to live with.

[EmmaF91 Community Ambassador]

I was on theophylline (just stopped it)... when at the right level it was brilliant for my asthma however getting (and keeping) at a therapeutic level was difficult. I had the unfortunate experience of going toxic on IV aminophylline (and theophylline a couple of times) and really didn’t enjoy the side effects... still I’d give it another go if I needed it!

My levels jumped about a lot and so I could be untherapeutic at 1 dose but toxic on the next higher one 🙄. When it worked my asthma definitely improved... it was put on hold due to tachycardia but when I started mepolizumab I didn’t miss it so I have yet to restart it.

[pauljobling1973]

I've taken this for quite a few years No side effects works really well good bronco dilater

[omahjoa]

Hi I have been on it for 2 years. 2 in the morning and 1 at night. I have found them very helpful and can tell the difference when I forget to take them. Hope this helps regards jo