Theophylline

[ihatesteroids]

My doctor recently prescribed it for me after a short course of oral steroids.Seems to have controlled my symptoms for now.Anyone using it ?

[Gilly100]

I used to be on it, when I asked my consultant about it recently he said it was an old drug. I think it can deplete your body of vitamin B. Check out on internet.

[ihatesteroids in reply to Gilly100]

One of the good things about it is a lack of side effects for me,doesn't matter if it's old.

[K8ty25 in reply to ihatesteroids]

Yes. I have come off this recently. It can be very effective but i found that the side effects where too difficult to live with day to day. However if it works well for you then there shouldn't be any reason why you can't use it to help your symptoms

[ihatesteroids in reply to K8ty25]

What side effects did you experience ?

[K8ty25 in reply to ihatesteroids]

Sevre headaches and sickness. When i discussed it with the consultant we decided that the side effects were too severe to continue to use it as a day to day treatment. However when i have really bad flares and go into hospital they do give it to me by IV to get symptoms under control. However its monitered by blood tests every few hours which means i don't get the side effects anywhere near as severely

[ihatesteroids in reply to K8ty25]

Sorry to hear that.

[K8ty25 in reply to ihatesteroids]

Its ok. I now get biological injections which have been brilliant so overall things have worked out

[Hannah125]

I haven't tried it but I've read a few things about it and apparently this drug can have serious side effects and I thought that is was the reason why it was no longer prescribed.

It's great that it seems to be working for your asthma without giving you any side effect!

But I'm not sure if this drug helps treat the inflammation in the lungs or if it just acts like a bronchodilatator ?

Do you use a preventer inhaler or just theophylline ?

[ihatesteroids in reply to Hannah125]

Well,I guess I'll have to see if it gives me side effects after long term use.I'm using just theophylline now as I still haven't found a tolerable preventer inhaler.

[Js706 in reply to Hannah125]

Theophylline works as both a bronchodilator and an anti-inflammatory (they used to think it was just dilation but newer research suggests it does both!). And it is prescribed as an add on treatment, so should be used alongside a preventer inhaler.

Some Drs don’t like it because it can have side effects in some people and if people’s blood levels get too high they can become toxic - but normally as long as people get their blood levels checked following any changes in dose this shouldn’t happen

[twinkly29]

It can have nasty side effects but that doesn't mean it does for everyone. I've only had sickness with it when my level was too high. But monitored and kept within range it's fine. Granted it doesn't suit everyone, but it can be ok. Like montelukast I suppose, some people find it's awful but others find it great.

[ihatesteroids in reply to twinkly29]

Montelukast didn't help me,though I didn't experience side effects either.

[Js706]

I’ve been on theophylline (specifically phyllocontin) for a couple of years and I found it was the first drug to make a significant difference to my asthma symptoms (I’m still uncontrolled but notice a huge difference if I end up missing any).

I’ve also never had any side effects from it, most people tend to find side effects often start early on or following an increase in dose and then they start to fade.

The most important thing is to make sure you get your blood levels of it checked around a week after starting and following any change in dose (hopefully your doctor mentioned this!). This is because they like to aim for blood levels between 10 and 20 as this is when it’s most effective. And above 20 there is the risk of becoming toxic, which can be very dangerous if not sorted.

So as long as you keep on top of having bloods done when needed there’s no reason you should have any issue with it 😊

[ihatesteroids in reply to Js706]

Thanks for the info.

[Lysistrata Administrator Community Ambassador]

I'm on this (well aminophylline, which is theophylline with a few changes to improve it a little) and love it. My consultant doesn't (I was on it already before seeing him) because it's old and because of the toxicity risk, but I'm not eligible for biologics (no IgE no eosinophils), so I have to take what I can get. I've never had any side effects from it - they were trying to say my fast heart rate might be one, but I pointed out it's normal most of the time except in flares, and it will probably be faster more if I'm off it since it helps my lungs! I was worried too before starting it but it's entirely possible to not have any side effects and if you don't then it can be great - but it's not for everyone, bit of a Marmite drug. They used it a lot before inhaled steroids came in for asthma, and then it was forgotten a bit, but I think it's good especially for those like me who are not very responsive to steroids.

There was a shortage of Phyllocontin (my brand) a couple of months ago and so I had to switch to another brand which is not advised, since the dosages match up - you need to stick to a single brand really if you can. I was on Nuelin SA for a bit which was better than nothing - I REALLY missed the three doses I didn't have of Phyllocontin when I was trying to sort it all out - but oddly I did feel a little sick on the Nuelin and other vague things. Nothing major and it wasn't an overdose I don't think because I compared levels with Phyllocontin and I was getting the same or a bit less of the theophylline dose, but I was relieved to get back to Phyllocontin when the shortage was resolved.

[ihatesteroids in reply to Lysistrata]

Yes,it seems great so far,especially given my troubles with inhaled steroids.

[Hidden]

I've taken it got s few years and wouldn't want to be without it. As others have said, just make sure bloods are checked for levels. I felt quite sick at first but that symptom faded after a few weeks!

[Ted007]

You clearly know that steroids have awful side effects if taken long term, so beware. I have had to take large amounts just to keep me alive over a number of years. The side effects are real and do happen - probably to everyone. My advice only take steroids of any kind when absolutely necessary.

[Autie1]

I take it and have found it to be brilliant. I was getting side effects from it but in agreement with my an and gp we reduced it to 1 a day and not 2 and it has been brilliant. I also take montelukast which is why i can go down to 1 a day. Remember to get your bloods checked quite soon after starting it to make sure your levels are right but apart from that good luck i hope it works for you

[shirl13]

I have taken phyllocontin since late 80's, also on montelukast since early 2000's and prednisolone daily since 1991, currently 20mg per day maintenance dose, Yes I have had complications but am still alive and to me that's what counts

[EmmaF91 Community Ambassador]

I was on it and it really helped my asthma become a little more controllable. However I have weird absorption and could be toxic and untherapeutic on the same dose... eventually taken off of it due to this as body got congested and gave me toxic side effects whilst levels were untherapeutic 😂

So long as you know what to look out for toxicity wise and get a Bt to make sure you’re in therapeutic ranges you should be fine!

[Hidden]

I’m on this-since getting therapeutic, trips to A&E have reduced to once a week so it must be doing something!

I hope that it continues to work well for you!!