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Theophylline, daily dose? or flexible dose?

I am set to go into my gp today after a horrendous past week of attacks, i have been told to go in to pick up theophylline or something like that. I just wondered is this medication something i can start and stop as when needed or do i have it all time and build it up in my system?

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you take it all the time unless you're told not to take it anymore and your levels will be monitored as it can sometimes be tricky to get the levels in therapeutic range.

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hi confused,

You take it every day and regular blood tests even though ive never had one done.

I take 1 morning and night and can double them when realy bad but that causes bad head aches so

after a week reduce them back to 2 xxxx

edit-have to reduce them back because make me toxic and causes more problems and can tell

my self now as get a megga headache on a higher dose xxx

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Hiya, theophylline is usually in tablet form and should be taken regularly. There is a fine line between a therapeutic dose and toxicity and you should be offered blood tests to check the levels. Once you have been on it for a while and the dose isn't changed the levels are likely to remain the same. I think therapeutic levels are between 10 and 20 and over 20 could cause nasty Side effects. My son has a real problem with this medication he is either too low for it to make q difference or has levels too high. When he is over about 22 he has severe headaches and constant vomiting. I had huge problems getting my gp to send him for a blood test as she said it was a virus and to keep taking the meds. He was more unwell the next morning and I insisted on a blood test and his levels were over 25. I lost faith in my gp and the meds as a result of this as this was a toxic dose and could have been very dangerous. If you do start it talk to the gp about regular blood tests to start with as it can cause nausea and headaches at first until you get used to it and you will feel better knowing what your levels are. Having said that I know some people who take it and say it has made a huge difference for them and have no side effects what so ever.

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Hi,

i had uniphylline, the nurse told me to take it unless i had nausea/vomiting then just stop it.

I had bad side effect, but had i carried on taking it you have a blood test after taking it a week and the i think it was 6 weeks after that. Apparently alot of people have real probs taking it as mentioned by others. Theophylline helps with bronchodilation in the lungs to help you breathe easier. I hope you find it helps you

Take care sj

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I have taken Theophylline all my life, on and off. I now just take it when I'm wheezy and it always helps. However, it does give me nausea and slight palpitations but I think it's worth it for the relief it gives me from my asthma.

My 13yr old son is on it twice daily and he doesnt have any side effects. He had a blood test to check if he was on the correct dosage and the dose was increased as a result. Anyway, I would follow the advice of your doctor as to how much you should take. Good luck and I hope it helps.

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Theophylline Vs home nebuliser?

hi i went to see the nurse who actually turned out to be a Doctor's assistant (?) and unable to prescribe medication, very annoying but she was great to ask all these questions to about medications. As the nearby walk in clinic is the One issuing the real patient healthcare there was a moment she was just reading up their notes as i just there wheezing!

she did mention the same thing as what you said angievere and said that its a worthy idea and refered me to the hospital asthma doctor who visits the practice and said that it is worth thinking of the nebuliser before the theophylline. but i walked out more concerned about the toxicity element of theophylline than the state of my asthma.

i wish i just got to see someone who could dispense medicine and would just be able to give me the tablets now so i could take them (and investigate later) how frequently are the toxicity levels likely to rise?

how common is it to keep a nebuliser at home?

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Re. Theophylline toxicity level. You mustnt worry about that at this stage. Side effects vary from one person to another and if the drug helps your asthma, take it! As I said, I have been taking it for about 40 yrs on and off, and I never even heard of a 'toxicity level' until it was mentioned in connection with my son taking it! And in son's case, the blood test was to ensure he was on a high enough dose of Theophylline. The dose was increased after the blood test - and he still has no side effects!

Re. home nebulisers. Medical opinion (and opinion on this Forum!) seems to vary on the subject. I purchased one for my son about 7 yrs ago and our then GP was more than happy to prescribe the nebules. He knew that I always sought medical opinion so wouldnt misuse the nebuliser. We havent used it in over a year now, but it's been an absolute godsend in the past.

Sorry to hear you didnt get anything more positive from your appointment. What is the next step? are you seeing the GP?

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have bumped some info on theophylline for you

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I find that uniphyllin works really well for me. The only side effect I get is a bit of nausea (but not everyday). The benefit of taking the uniphyllin far outweighs the feeling sick (for me anyway). I have never had any problems with my levels, infact my old consultant wasn't that bothered about checking them if it was working and I only had mild side effects (I think there seems to be varying opinions of if/how often to monitor levels).

On the home nebulizer question I am not sure it would be appropriate in your situation. Generally they are only given out when people have had lots of admissions and the nebulizer enables them to spend a bit less time in hospital or also they are given to people who have had very sudden (brittle) attacks. Over recent years they have been given out less because the big danger is that people use their neb and do not seek help soon enough.

Wouldn't it be worth trying the theophylline first and hopefully it will improve your general control?

Hope this helped a bit.

Bryony

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Theophylline, daily dose? or flexible dose?

Hi, im due to see my gp again tomorrow as this assistant was not able to do much and the thing most annoying is that she kept focusing on negative side effects of theophylline instead of taking into account that i'm struggling to breathe at most times. the other annoying thing is that my asthma is really sudden and by the time i get myself sorted out is when i've used my reliever about six times or more. i'm debating if this is worth keeping a nebuliser at home.

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If your reliever is doing it's job and relieving the symptoms as you have just indicated there wouldn't be a need for a nebuliser. I've been on theophylline for about three years now and found it made a big difference.

Nebulisers aren't as great as is made out to be. Because they are essentially a reliever (in the case of salbutamol) they do not prevent attacks happening - in some people (mainly with severe/brittle asthma) a nebuliser provides a better quality of life for people so they don't have to go into hospital as often, but these people will often have consultant follow up and a strict plan of action for when to seek help.

Theophylline, therefore would be a better choice, in an attempt to prevent attacks happening in the first place.

Em

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Theophylline Vs home nebuliser?

hi em,

guess your right as i now have the spiriva too. i'm sort of sitting back and thinking why wasn't i given theophylline a while back before the Flixotide went up?

I honestly feel as though my Doctor's are leaving my asthma to develop more and more without taking action faster. why am i having to investigate so much!

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hiya, wrote a whole long message earlier when I bumped up the info on theo and lost the whole lot cos I took to long it signed me out!

Basically was saying theo is a good drug if it works for you. My son has stupid side effects to alot of meds and had problems with his levels either being too low or too high and rarely in the theraputic zone, but hey, that's just him. He has probs with steroid sparing agents making him vomit even at low doses, has severe vomitting and headaches with IV Salbutamol and can't even take white Pred without gagging.

The main side effects are headache, nausea and fast heart rate. These usually settle after about a week. If you are concerned about levels it would be worth asking for a blood test after the 1st week. This is far more likely to show a level too low (which is good as it means you can adjust levels to suit) than too high. Once the level has been established it is unlikely to change without a change in dosage. However, certain anitibiotics and viral infections can alter the absorbtion rate which can lead to levels increasing.

As for the home neb, I am going with what the others have said. My son is under the Royal Brompton and I know they do not like their patients having nebs at home unless it to use whilst waiting for an ambulance or because not having one would result in alot of time in hospital. My son has numerous admissions every year and I have been told that if he is requiring nebs he needs to be seen at the hospital.

Using 6 puffs of Ventolin to control an attack does not mean you need to neb at home. Jay regularly uses 10 puffs of ventolin with a spacer sometimes up to 6 times a day. He can use 3 lots of 10 in one go (the same as back to back nebs) and if that isn't controlling the attack he needs to go to A&E. I am not suggesting you should use that amount of Ventolin without seeking medical help, just showing that my son requires that amount regularly and doesn't need a neb at home. His consultant at RBH is one of the leading resp specialists in the country and he opposed to home nebs as they result in a delay in treatment and give a false sense of security. Most asthma deaths are preventable, but happen because people delay getting help when they need it and nebulisers are one of the worst things for this.

Just to say, I have a clear plan as to how much Ventolin my son can use and when to seek help. His management plan has been agreed with his consultant. If we went to A&E everytime he needed more than 10 puffs of Ventolin we would be there more than at home.

Hope this helps you make a decision, did you get any joy with your referral?

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good old paper bag?

hi Koolkat,

Im due to see my gp tomorrow morning and im going to ask for theophylline and a referal, to be honest i think the spiriva is starting to kick in, which is a great feeling its been four days that i have been using this and i wonder if spiriva needs to be built up to get the full effects. Either way, I cant see there being any harm done trying something or even keeping it with you to add in if needed.

I guess for me keeping a nebuliser in the house might also be a psychological hindrance - its bad enough realising the severity of my asthma and to think that ive got a machine to get my lungs sorted in the house might not be best thing. I want to try theophyllin as im sick and tired of this monthly/ bi monthly flare up.

Something has to give, im curious to know why my gp never stepped up from step 4 ages ago. If they refuse a refferal then im going to as the asthma doctor (already booked in and trying to move forward) who visits the practice to refer me to the hospital (she is from the local hospital and vists every month I had to switch from her as she was too difficult to get a hold of) its just frustrating that the practice gp I usually see has left me on flixotide and not stepped up to stage 5 care.

Besides this walk in emergency surgery always tends to give me the right medication at the right time. I will scream (will probably wheeze at them instead) if they call my asthma brittle and then give me a course of antibiotics and no theophylline.

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i thought GP's could only prescribe up to singulair and anything else such as theo had to be via hospital docs / consultants? I definately think you need to see a consultant if you are on that much medicatoin and still not controlled - hope you feel better soon x

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hi cal,

i thought so too, but the doctor at the emergency walk in clinic wanted to prescribe too but then said i was better off discussing with my own gp as i would need the follow up after care. Thats what made think Gp's could prescribe it, to be honest I just want this crazy asthma controlled.

it would be really frustrating if they were allowed to prescribe it and they never considered it before for me - whilst ive been suffering like crazy.

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Update.

Hi just saw a different dr to the one i usually see and he said to cut out Flixotide and keep spiriva and increase the Seretide as i would get more of the Serevent that way. actually similar to what the walk in gp said.

i'm just thinking i might be better switching gp's now as he was puzzled why the Flixotide kept being topped up and i sort of felt as though i walked into gp surgery politics there.

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Hi Confused, So what's happening about the Theophylline then? What did this doctor say?

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hi confused.

It was my doc who prescribed my theophylline and also told to take more sertide 3 times aday.

hope the theophylline works better for you.

love Glynis xxx

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Hi he suggested to try this increased seretide for two weeks until i'm booked in to see the hospital doctor and then discuss theophylline. i'm also hoping that this hospital doctor will refer me too.

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Is the hospital doc not a consultant then? If not then surely they should be able to refer you to one?

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hi,

to be honest im not sure. I've wondered that before too. I saw a gp yesterday (6th aug) as I had to switch my accuhalers to evohalers (I was not even able to suck the medicine in), I mentioned theophylline to him and he didnt give it but i could tell there no other solution now but to start theophylline. This GP said that usually this medication was dispensed by the hospital but he said to wait a week. However on the 2nd when i saw the practice nurse she refferred me to the hospital doctor refferring to her as a specialist.

I think she will be able to start me on theophylline I think my gp surgery have run out of ideas to treat my asthma and its really annoying! But i have one question can you have theophylline and spiriva at the same time? Or switch as the severity gets worse?

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