British Lung Foundation
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has anyone heard of daxas/daliresp

Some friends of mine in the USA with COPD use a drug called daliresp - (roflumilast) they reckon its the best thing ever as it decreases the number of exacerbations making them feel better.

The only problem is the side effects are, in my opinion, really bad.

Has anyone else heard of this ?

Would you take it?

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Yes I have, I have known people who love it and others who can't tolerate it. A good friend of mine was on it but had to stop because of the horrendous side affects. Yet another person can't believe how much better they are on it. I think same with all medicines, what may suit one doesn't another.

NHS UK infor here and further links to NICE guidelines from this page:

my friends rave about it Zoee they say it has changed their life.

How long have they been on it now krazy? My friend could tolerate only 2 weeks, she had sever headaches and sickness, her doc took her off it. Some people on copd international have had some bad side affects, you can probably find info by searching that site also. Its always worth discussing with your doc if you think you fit the criteria, you may be one who is so much better on it.

Let us know if you try it and also how you get on with it. Hope it helps you.

that's where i have my doubts - the side effects include dying thoughts and suicidal thoughts, depression, mood swings, insomnia, acting on dangerous impulses and mood swings.- ( before anyone says it yes! i'm a woman so i already get the mood swings!!! :) lol)

I know these are the most severe of side effects but, personally, not sure if it is worth it,

so fed up with being off work that i would try anything but not so sure i would try that.

Still thinking about doing that drug trial so not allowed to change my meds anyway !!

Yes read that too, my friend also mentioned it made her really irritable but that could have been because of the severe headaches. Even if you do the trial it won't hurt to ask your regular GP about it and just keep in mind for future possibility. How long does the trial last for? You will have to keep us posted on that also if you decide to go ahead with it. Do they tell you the name of drug being trialled?

its for 2 weeks - all i know is its an inhaler and this is the third test for it - they don't tell you its name because they don't want you to be influenced ( google has a lot to answer for!!! lol) so it will be called AB1234 -

i havn't decided i will defiantly do it yet and i'm still thinking about it - need to read the paperwork again before i decide

Thanks will check out the AB1234 :)

Hope you are feeling better now krazylady. Take good care. Zoe

Been mentioned here before

NICE recommends roflumilast for people with severe COPD only if they are taking part in a research study (clinical trial) that is investigating using roflumilast at the same time as a bronchodilator (a type of inhaled drug).

Why has NICE said this?

NICE looks at how well treatments work, and also at how well they work in relation to how much they cost the NHS.

NICE recommended that roflumilast should be used only as part of a research study because at the moment there is not enough evidence about how well it works or about the best way to use it to recommend it for use in the NHS.

I've taken it for almost 2 years. I haven't even had a sniffle since. I used to get bronchitis and pneumonia fairly often. The side effects were nasty for about a month and then they went away and I have had no problems since. The side effects for me, looking back, were well worth it even though at the time it was a struggle. I will take a month of diarrhea, nausea and lack of appetite any day over life threatening respiratory ailments.

1 like

is there any update on availability of roflumilast in UK - a new US report says that this is a key to reducing exacerbations

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