Uniphyllin Continus

[floating_]

So, they want to start me on this whilst I'm in hospital, how have you found it if you're on it or have been on it? Thanks!

[Hidden]

It helped my breathing enormously but unfortunately I had to stop taking it as it caused tachycardia, such that I couldn’t sleep. I was upset because it was great. I do hope it works for you without unacceptable side effects x

[floating_ in reply to Hidden]

Ohh, thanks for the heads up! Maybe they'll have a chat with my cardiologists, worst comes to worst they'll up my other medications haha. Sorry to hear you didn't get on well with it.

[Lysistrata Administrator Community Ambassador]

I really like it! I used to be on Phyllocontin Continus which is aminophylline (ie chemically tweaked theophylline). I had to switch to Uniphyllin (which is theophylline) when Phyllocontin was discontinued, and I was a bit concerned because previously I'd felt a bit crap on a theophylline formulation (nausea mainly) and the dosing was hard to get right.

However, Uniphyllin has been fine for me - no side effects it seems, and definitely helps (I WILL notice if I miss a dose!) I take 400mg twice a day which I think is the max dose.

It's definitely a Marmite drug I think as not everyone tolerates it, and it can behave a bit unpredictably - people do seem to process it and react to it quite differently! That means the optimal dose for people seems to vary - some people will get all the benefit on a lower dose, but I find this higher dose best for me.

I assume they've told you they will need to do a blood test about 5 days after you start, which is when the drug concentration usually reaches steady state? If you're a little low that's usually not a problem as it can be effective still even slightly below the therapeutic window; too high is usually more of a concern.

[twinkly29 in reply to Lysistrata]

Yes my levels are usually lower end of normal range or just below but apparently being slightly under range is fine and actually works better for se people. Being borderline top of range was not fine for me! This happened after I'd lost weight so my 400mg BD presumably meant my natural position in the range went up...then I had a virus (one of many things that can make levels go up I think, caffeine is another....) and it tipped the balance.

[floating_ in reply to twinkly29]

Interesting, sounds like a really sensitive medication by the sounds of things, but I'm willing to try it to see if it helps!!

Hope you're doing okay.

[floating_ in reply to Lysistrata]

This sounds super promising! Let's see what happens with me lol! No, well, sort of, they mentioned a blood test but idk what or when lol, but I assume they'll let me know. Not sure when discharge will happen so might still be in here even? Doubt it. But not sure.

Hope you're doing okay? How are things?

(PS sorry for taking not getting back to you in messages, been struggling. 😳)

[Lysistrata Administrator Community Ambassador in reply to floating_]

Hopefully you will be discharged soon (safely), but if you aren't in hospital the GP will need to follow up with doing that!

No worries at all re messages, just sorry to hear you're struggling and admitted! I hope things improve soon.

Not too bad here, just limbo and weather causing the usual issues.

[selyab]

I've been on these for years it's a slow release tablet that should be taken as prescribe keeping Airways open

[Bwv945]

I’ve been on this for many years. When I started taking it it was a game changer and helped prevent the frequent severe night time attacks I was having at the time. I had to build up the dose very slowly though as initially it caused terrible nausea. Taking the tablet at night helped with this too.Good luck x

[cathmc58]

Got to be honest, I was dubious, but no side affect as such, but I am feeling more breathless, I'm due hospital check up next week and will see what they say, could be condition changing, (I have asthma and copd) just have to see. Good luck stay well x