Phyllocontin questions

Just been put on Phyllocontin - a surprise, thought something else was next but my usual cons was away (grr as I rang up and checked specifically and they said yes, he'll be there etc). However the one I did see was lovely and a good listener so now at least I know there's someone else I can see if nec as he said my usual one (who is more of a researcher) might be reducing his clinic time.

Apart from feeling vaguely like a plant (is it just me or does Phyllocontin sound like plant food?), I realise I totally forgot to ask several things (but was having trouble breathing at the time, hence brain scrambled, and ended up back in A&E at same hospital that evening, fun fun - but the ambo people who 111 sicced me onto did some good stuff (IV hydrocortisone, not had it before) so got out reasonably quickly. I was desperate to get off pred and it didn't seem like it was doing much - apparently it was after all.

Main question is: how long does it take to start working?

I know that levels need checking carefully as the therapeutic range is narrow - done a search on here and seen some scary things about how variable it can be. I'm seeing cons again in a month so presume they will check levels then, or does it need doing before then eg by GP? It's 225mg twice a day which seems the standard starting dose. How often does anyone else have blood tests for this?

However, I've not given things long enough before so was really wondering how long it's meant to take to kick in - days, weeks...? Anyone else's experiences?

Also the pharmacist said it doesn't affect your stomach and doesn't need to be taken with food - but from what I've read on here from others on this and similar I am sceptical, so am taking it after breakfast and dinner; have others found this helps? I am really hoping it works as while I'm not as bad as many my lungs seem to be persistently a bit delinquent atm and I don't want it to interfere with my lovely new job (bad enough the time off for appts...). BUT I am a bit worried about the feeling sick thing so hoping I can minimise this.

EDIT: also, any tips on the best way to manage the 12 hours thing? Fine in the day but I can see myself getting it all messed up re the night time and morning doses, so wondering how others had got this sorted without getting it all out of kilter.

Glad I'm being taken more seriously now and seem to have to do less convincing, but I do seem to be turning into a walking pharmacy... Let's hope it works -the Spiriva seems good, on the basis that I really notice if the bloody Handihaler stops working (great drug, not convinced by device).

Sorry for ramble, brain reallly not working atm hehe.

14 Replies

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  • Hi Philomela,

    I'm on Phyllocontin as well. Once they got my dosage correct it started working within a day or two.

    I had blood tests every 4 or 5 days done by my GP. I'm not sure if it's the cause of my heartburn as I take a lot of other drugs as well (mostly very high levels of antibiotics and Carbocisteine).

    I had a lot of IV aminophylline in hospital and made me feel drunk but not sick.

    Don't get me started on the handihaler...not exactly a good design...stupid fiddly green capsules... ;)

    James.

  • With uniphyllin you need testing after something like 4/5 days of starting or changing doses, so I suspect you should book it sooner....and I've found everyone gets all excited about doing theo levels as it's rare! Lol!

  • Please don't wait a month before getting levels checked... :-/ I would get them done after a few days, and then a few days after any required dose changes. Theophylline toxicity is not funny x

  • from the british national formulary (doctors prescribing bible):

    Plasma-theophylline concentration

    In most individuals, a plasma-theophylline concentration of 10–20 mg/litre (55–110 micromol/litre) is required for satisfactory bronchodilation, although a lower plasma-theophylline concentration may be effective. Adverse effects can occur within the range 10–20 mg/litre and both the frequency and severity increase at concentrations above 20 mg/litre.

    Plasma-theophylline concentration is measured 5 days after starting oral treatment and at least 3 days after any dose adjustment. A blood sample should usually be taken 4–6 hours after an oral dose of a modified-release preparation (sampling times may vary—consult local guidelines). If aminophylline is given intravenously, a blood sample should be taken 4–6 hours after starting treatment.

  • It doesn't take too long to get upto the range that will be in your blood. When I started on uniphylline my levels were checked after a week and then again after the dosage was changed!

    Soph - I just think they are vampires and like to steal your blood!

    I'm on my 3rd day of IV aminophylline and because the therapeutic range is so narrow, having blood tests daily to check my levels. I'm not currently taking oral.

    You should feel the difference pretty quickly with the tablets. The sickness does wear off, so you should be ok. I found that I had a few days of feeling yucky which eventually subsided - both when starting it and when increasing the dosage. Though IV makes me feel sick still. Get some decent antisickness stuff from your gp.

    Spiriva - argh!! The device is stupid!! I like the stuff though. Not currently allowed it as on atrovent nebs as my lungs are a bit stroppy! I don't know if there is a different device that you can use?!

    Hope you feel the good effects of the new meds asap! Hope it's your wonder drug :-) xxx

  • Hello there!!

    Defiantly agree with everyone else, don't leave it a month to get a level done, become toxic is really not no central and being un therapeutic is a bit of a waste of time having taken all those tablets with them having done nothing, us if your level isn't correct in your body, your going to think that the drug isn't working for you.

    In terms if how long it'll take to start working in your body, with myself, once I had the correct level it was working within a few days, my peak flow was up and I generally felt better.

    Try not to worry about all the things that the drug can do, all drugs have side effects and if your doctor was that worried about them with you they wouldn't have prescribed it. It's the weighing up game again very similar to steroids I'd say.

    Hope things do start looking up for you and you enjoy your new job

    Xx

  • Glad to hear that you have a good listener in your cons absence. Sorry you're still struggling.

    My GP took some persuading when it came to checking levels, so I phoned my clinic and got it done in outpatients initially. Had a six month test and then again when captured.

    For me it started working in the first couple of days. I'm one for tacking it after food (although maybe phyllocontin is more gentle on stomach than Uniphyllin). My pharmacy dispensing label says take with food, but the leaflet says with glass of water.

    Hope it's as good for you as it is for me. xx

    Laurs- really sorry to hear you're in again, hope it's not as difficult as last time. xx

  • Thanks everyone` for your wisdom, this is why the forum is so great! Cons good but why did he not tell me this...? Will have to contact GP I guess and take my piece of paper in. Have already made grand entrance by ending up in A&E before I managed to see them to get medication...at least it got me over a gap hehe.

    Another q I had (posted above as an edit but I forgot to actually press the 'post' button this morning so it's kind of hidden):

    Any tips on the best way to manage the 12 hours thing? Fine in the day but I can see myself getting it all messed up re the night time and morning doses, so wondering how others had got this sorted without getting it all out of kilter.

  • What do you mean? Are you talking about spacing the doses 12hrs apart? Just pick what will work best for you. I'm not a morning person so do 10am and 10pm. If I'm barking up the wrong tree ignore me ;)

  • Yes - I know what I should be doing but I can see myself getting wildly out of kilter if I forget, or go out, or sleep in etc etc.(because I'll need to remember to take it out with me/take it to work).

    So can do it in theory but wondered if anyone had any handy organisational tips for what they do. :)

  • Why don't you keep a strip of them in your purse? That way you don't have to rember to take them out with you!

  • Hi Philomela,

    I take my unipyllin the same time as my Symbicort. I am an early bird so used to take them at 6am and 6pm but as mornings are my worst time I tried changing it to 8am and 8pm and it means when I wake I still have some of both meds in my system and it has improved my mornings. If I am out I carry them in a plastic pill pot and put a reminder on my phone.

  • I did the same as JF at first. Put reminders on my phone until it was well engrained. I take mine 8am and 8pm, same time as seretide. My leaflet says I can take it up to 4 hours late, but I find I can't leave it that long as it'll make me shaky, wired and nauseous (after I've taken the following dose on time). I don't worry if I have a lie in and end up taking it and hour or so late.

    If I miss a dose then I get an awful headache about 9hours or so after which will go away a couple of hours after the next dose has been taken. Just curious if anyone else gets this with any theophyllines.

    You'll get used to planning evenings and carrying it with you when out. It's one of the things that bothered me when I started but now it's second nature. I have some in my handbag and car.

  • You could always just keep a box either next to your bed or on you pillow that way I'll always see it because you always go to bed!? That's what I have done with my partners tablets now as we were always so focused on my tablets we were forgetting here's. We now have them next to the bed and remember them every night

    Xx

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