Theophylline

Hi Everyone!

I've been put on Theophylline to see if I get any relief from the breathlessness etc. I took my first tablet last night and was wondering how long it will be before I start to see a difference (if any)??

Thanks

Jill x

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HI Moomoo,

It works quite quickly to open your airways but better 3 or 4 days to build up better.

You also need blood tests to check you are on the right amount .

Try keep to same times with 12 hours apart

im on Slophyllin xxxx

[yaf_user681_2584]

hey.

it started working pretty quickly with me, i think i noticed a difference within a day or two! i am really sensitive to it though.

as glynis says, make sure your levels are checked as they need to be theraputic for you to get a benefit.

B x

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Thanks for the replies, there hasn't been any mention of a blood test ... What's it for??

Feeling odd today tbh got tremors and not steady on my feet and really fatigued, is this normal??

Xx

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Btw the brand name ive been put on is Unipylline

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hi Moomoo. the blood test is to make sure the right dose is given.If sub theraputic it isnt high enough to help and needs to be increased to make it theraputic,result usually between 10 and 20. Mine is 15. If over 20 blood can be toxic and you get side efects and need it reducing. Usualy 3 month bloods done to keep eye on it. I can remember having a headache when started on them xxx

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Oh right ... thats not been mentioned but then again I'm being monitored by 4 different specialists I'm sure one of them will cover it!!

Had a better night on last night but still not seeing much of a difference during the day so I'm thinking I need to start taking one during the day as well but abit sooner than they suggested. It just seems trial and error to get it right so i'll bear with it.

xx

[Skee-skee]

I don't think every specialist believes it is necessary to have regular (or even one off) blood tests. If you feel the benefit and don't have any bad side effects then they assume your levels are OK.

I have been on it for more than 6 years with a little break and have never had a blood test to check my level except when an inpatient.

I find it works for me- hope it works for you too Jill.

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Good luck Moomoo.

Sorry diverting slightly but has anyone had this from their GP or is it always prescribed by consultants?

Think this may have come up before but can't see it at the moment. GP has said only under hospitals here?

I'm asking as GP asthma nurse suggested my response to steroids is generally less sustained than expected and perhaps try more of a bronchodilator approach i.e. more Atrovent as much better with that. So Theophylline may follow as on the same lines?

Luckily or not just found out appt with cons. to clarify things has been moved sooner and is with another one. Basically, not sure if asthma or if it is atypical/difficult, try physio for breathing and refer to Brompton if needed.

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I was interested by this thread and also TJ's response as was wondering too given my pathetic response to steroids! I'm due to see the GP on Friday, not expecting he can do much but can't keep on the way I've been for months while I wait for chest clinic to get their act together, esp not if it's like last time. Was interested that you mention Brompton TJ as I always thought that was only for really severe asthmatics who'd been bouncing in and out of Costa while I get the impression you are more like me ie bit difficult but not Costafied? Think it will be local cons for me again urgggh but am going to ask GP how far along he's got (not very I should think, admin isn't his thing) and whether I have any choice.

Sorry to hijack your thread MooMoo! I do hope it works for you and you start to feel a difference soon. And TJ, maybe the other cons will be more helpful? Hope so anyway!

[angievere]

I've been on theophylline most of my life and have never had a blood test! Only heard about it on here. When my son was put on it about 5 years ago there was no mention of a blood test but 2 years ago a different GP ordered a test and it showed my son was taking too small a dose and it was upped. Our usual GP was annoyed about it and said there was no need for blood tests...

To answer your question about how long it takes to kick in - with me it's always within about 5 hours. But my son takes much longer. It does depend on the dose.

Anyway, I hope it's helping you and you are feeling better.

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I thought theophylline was prescribed by consultants and my GP just does the prescription under consultants instructions... When I was first on uniphyllin I had blood tests done every two weeks, then monthly... for me the side effects outweighed any benefits and I asked to stop this medcine... been asked to trial this drug on three occassions with the same issue each time... I guess when it works it helps... if not back to square one...

[angievere]

TJ - Forgot to mention my son's theophylline was advocated by the consultant but GP refused to prescribe it - said it was too drastic and old-fashioned (!!). Consultant wrote twice and I pushed for it before GP would prescribe. It's helped my son a lot.

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I just wanted to emphasise how important blood tests are when taking theophylline! I was on it and my levels didn't get checked; I ended up with toxic levels of theophylline in my blood - I felt incredibly ill and vomited blood. It wasn't pleasant!!

I hope you notice a difference soon Jill.

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just hijacking the thread here: what is the difference between theophyllinne, aminophylinne and uniphylinne? i was on aminophylinne IV in chelsea and westminster, and it really messed with my heart, i have had some rythm problems since viral myocarditis in 08, but it got really bad, so after ICU was transferred to cardiac care uni, not lung ward...is this a normal regular side effect?

[yaf_user681_2584]

hey rose,

i *think* (this is really dragging up medical knowledge lol!) that aminophyline is theophyline mixed with ethylenediamine which makes it more soluble in water than theophyline on its own.

uniphylline is a brand name of theophyline tablets.

aminophylline is what is given iv (although you can also get tablet form).

and yes, theophyline/aminophyline can cause heart side effects (tachycardia, rhythm problems etc) along with other side effects, especially if your levels are toxic.

i can tolerate aminophylline tablets but if i have it iv i get a really fast heart rate and vomit everywhere lol!

i hope this helps and please anyone correct me if im wrong!

B x

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Thanks Angivere & Malawi2, that's what I thought but had vague recollection of previous posts here being prescribed by GPs. In regards to blood tests, levels need to be checked similar to thyroxine for hypothyroidism.

Philomena, I was surprised too by the Brompton referral suggestion as your impression is correct i.e. I'm not a textbook case & haven't been in Costa. The cons did say unhelpfully he doesn't know what to do with me. Am apprehensive of what would happen now if I do need to go in as that is not very confidence inspiring. You should have a choice of hospitals to book appointments with Choose & Book referrals which have always been quick for me. Not sure you can choose consultants though unless the practice sets it up when they send it off.

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Thanks TJ. I maligned my GP it seems, as he sent off the letter two weeks ago but has heard nothing, and has asked his secretary to chase; however I didn't seem to get a choice or even see a choose and Book form at any point which confused me (last time here I got a form but there was no actual choice, but in London I did get a choice).

He also seems to think I should get an appointment in a few weeks which has me scratching my head given he must have dealt with this lot before! Last time it took about a month and several phone calls just to set up the appointment, then I was apparently lucky not to have to wait three months...even though I pretty much did in the end.

Anyway, sorry for going off track, and thanks everyone for the info about theophylline in case that's up next.

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It was my local NHS asthma nurse that prescribed me the Unipylline. I'm under her, my GP and my Chronic Cough Consultant and awaiting appointment with Chronic Asthma Specialis too.

So far (touch wood) feels like its working but I've yet to take one during the day, only been on them at night so far. I'm getting tremors but I can handle them but I'm still exhausted all the time and still don't have the energy and get very breathless walking short distances so I'm still stuck at home and unable to go back to work.

Thanks for all your responses really appreciated xx

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Side Effects

Justa shout in the dark. Earlier thsi year I was prescribed aminophyline. Unfortunately my skin decided that it did not like the ethylenediamine and what a reaction. My whole upper body looked to be red sun burnt. tchy as hell etc. I had to tell teh quack to give me Uniphyllin Continuos Sr. Sorry about the spelling.

Up shot was it worked. Don't stop taking it too soon like what I did, now I am back on it long term.

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Hi,

I got put on Theophylline at end of September. To help me get off oral steroids. I've found so far that it is working really well. I was having bacterial chest infections and asthma exacerbations every 4-8 weeks since last December (and regularly before that...boo!) and was dreading hitting the cold/flu season. But so far 1 cold and a couple of sinus infections, a slight asthma exacerbation but no bacterial chest infection and peak flow stayed pretty constant. So hopefully, touchwood, on last week of oral steroid taper (been on them pretty constantly since end of May).

Side affects - found I was really crampy and shaky to start but this has eased off loads. Found best to avoid caffeine after midday initially. Also I know it says take on empty stomach first thing but my asthma nurse advised taking it after breakfast as I was getting lots of cramps and I'm on meds for reflux as it is. I haven't noticed a change in benefit in switching to after breakfast.

I'm getting bloods taken early in the new year.

Cheers

Abs