Theophylline

[SilentAsthma]

Hello

I have my medication review next week and we’re discussing switching Montelukast for Theophylline as my asthma is becoming more controlled and isn’t allergen driven. Does anyone have any experience of Theophylline.

For reference, I have severe asthma that is barely controlled, and for the majority of the time there’s no identifiable trigger. Thanks.

[Lysistrata Administrator Community Ambassador]

Hi - also have non-allergic asthma, know some of my triggers but other times it's less obvious. I'm on both of these: montelukast actually does work for me oddly enough - not dramatic but it helps, but I realise it doesn't help everyone. I ended up asking to go back on it twice because I found it made a difference to my quality of life, which they hadn't asked about.

Theophylline (Uniphyllin extended release for me) really helps me, though I know it's a 'marmite' drug for both patients and doctors, love it or hate it. I seem to have a good tolerance for it. I've had some of the usual comments about it being old-fashioned and unnecessary in the era of biologics, which I have very little time for. They can take me off the old-fashioned drug when I'm actually eligible for the new biologics, but since the current approved ones are all geared towards types of asthma I don't have, I will stick with the older treatment for now! When I pushed it the consultant did admit that if I wasn't having side effects now I wouldn't get them in 20 years - that's a consideration with steroids but apparently not with this. So I'm glad to see your team is being open minded about it!

This post should help with the details (scroll down a bit for theophylline): healthunlocked.com/asthmalu...

[SilentAsthma in reply to Lysistrata]

Thanks for the link to the other post and your experience. Let’s see what the ‘marmite’ view of GP is!

[Spikedog66]

Hi I recently started theophylline the consultant did suggest montelukast but changed his mind and gave me theophylline at present I haven't felt any difference in a month but have up to now no side effects. If you're happy on montelukast don't change, why fix something that's not really broken. Stick to your guns and say no if you're okish, theophylline has been used for over 70 years montelukast is relatively new compared to this. It can be given combined too. Its your health not theirs. You could always give it a shot and change back if it doesn't help but its the bit in between thats scary. I hope you get on ok see what they say. x

[risabel59]

Hi, I also take Uniphyllin extended release, at a non theraputic level, to try and make me less triggery, I think it does a good job. Because I take it at a low level, I don't have to have constant blood tests. Depending on the level you take it at you will have to have quite a lot of tests to keep it in the right range. The first time I was prescribed it I had awful side effects, but now it it is good at this low level. I also take Montelukast as well as a wide range of other stuff. I & my consultant are hoping that I will be eligible for this new Biologic that is coming out on the NHS at the end of this year called Tezepelumad. Who knows. I say try anything and hope it works. Good luck with the TheophyllineR

[SilentAsthma in reply to risabel59]

That’s interesting with the combination of the two, the GP (specialism in respiratory) is trying to achieve a balance of drugs so we can attempt to reduce the pred from 40mg a day.

[Painandlost]

I was only diagnosed with asthma a few years ago at 59 such a lovely present but have been unable to find a trigger apart from infections was put on montelukast at my first follow up appt following my second a severe attack in a few months and despite covid have managed to stay away from blue lights since but i think as much as anything because i have learned to cope and calm my anxiety when i cant breathe! When it first happens you are just so frightened! But getting used to a cocktail of inhalers and pills and surviving is hardly living and last year i was needing rescue pack of additional antibiotics and steroids every 6-8 weeks at least now it seems 12 weeks but just dont know what to do next

[Ripplepip]

I have been takeing montelukast tablets for years but have never seen that they make much difference i asked my asthma nurse about stopping them but was told they do help

[AlexInWiltshire]

HelloI am sorry to hear that you have severe asthma, and hope that your news medication will be very helpful.

Please could you tell me what severe asthma looks like?

I am quite newly diagnosed, and have been struggling all year. I have between 3-6 asthma attacks per week. I have been on montelukast for one week and my doctor says that there is nothing else they can do for me. I also have relvar ellipta preventer inhaler, and blue inhaler for reliever. He isn't interested in hearing when I have attacks and says just keep up the meds. My work is badly affected by asthma attacks and my manager is annoyed with me, even though I haven't actually had time off work for asthma (yet.)

Thanks.

[SilentAsthma in reply to AlexInWiltshire]

Hello, so the best definition of what severe asthma may look like from a medication perspective I’ve found is this: high-dose inhaled corticosteroids (I’m on Fostair 200/6) PLUS longer-acting medications (I take prednisone, more often than not at 40mg, Spiriva respimat, Montelukast, and after my latest jaunt to A&E, I’ve just been prescribed another steroid based inhaler to try and get the prednisone down to 5mg).

I’ve started from a medication point of view because it gives an indication of the layers that are put together to try and prevent attacks and it goes with saying that the assumption is that the drug regime is being adhered to over a number of weeks / months.

However, from my reading and experience (which doesn’t mean it’s right but just my perspective) I would say that medics are more likely to ‘label’ as severe when the asthma is uncontrolled despite proper use of these meds. By uncontrolled I would say they mean frequent visits to A&E that require significant intervention, for example I’m likely to be given the following in an escalating pattern salbutamol, Tiotropium bromide & salbutamol mixed, hydrocortisone, and finally magnesium sulphate.

But, the caveat to all the above is that’s my lived experience and perspective, technically I suspect on paper the definition may be a lot less involved and drawn out particularly if triggers are clear.