Trelegy

[Anapanasati]

Sounds like something from the BeeGees' back catalogue.

It's one of those meds with dire warnings about discontinuing it. "Don't stop taking this medication.." etc. So I'm a bit concerned about starting on it as my symptoms seem mild even if my diagnosis is anything but mild.

Some blood pressure meds are notoriously difficult to get off once started, allegedly. So what's the deal with Trelegy? Do you become physiologically dependent on the stuff such that you get rebound worsening of symptoms should you quit? Anyone who's come off it care to share?

Oh, and hi everyone.

[Corin1950]

Don’t know about coming off it but if you put Trelegy in the search at the top of the page you can view the previous posts about it.

[2greys]

I think all combination inhalers containing corticosteroids say this, it is the long term steroids that makeup a large part of it being a preventer, stopping it suddenly will probably induce an exacerbation (flare up of symptoms). Stopping oral steroid tablets suddenly can have the same effect, which is why there needs to be a weaning off process.

[Hidden]

My understanding is that you can’t suddenly stop it, with the key word being suddenly. If your doc switches you to an alternative med, that’s fine, but suddenly stopping it where it’s a beneficial medication without something to replace is at best going to land you back where you started. At best. As 2greys says, most if not all inhalers containing steroids carry exactly the same warning, in the same way that oral steroids are also not to be suddenly stopped by the patient.

As for coming off it, my daughter was on relvar ellipta off licence, which is the same active ingredients as trelegy minus the anticholinergic bit. She’d been on various steroid inhalers for years, and I’d never been completely convinced she needed them, particularly with the circumstances of the switch to relvar last spring, so when we moved and I explained what had been going on (demonstrably poor care for a number of years), her new team asked if I’d be willing to try stopping it. It was done whilst she was already in hospital, but purely as it was convenient and allowed them to closely monitor what her lung function was doing to see if she did need it. No issues coming off it at all.

[Ladyindistress79]

I have been on Trelegy for some time now and find it is ideal for me. Just once in the morning and it sets me up for the day so I wouldn't come off it except on advice from the Doctor. I think with all these steroid inhalers you would want to speak to your Doctor first before stopping it anyway.

[suzley in reply to Ladyindistress79]

I have been on Trelegy since February and it is wonderful. One puff a day instead of three different ones. 😍

[Anapanasati]

Good stuff everyone, thanks for taking the time, I'll give it a go then.

[COPD123491]

Hi

I was on Trelegy for a few short weeks only and had to stop because of a serious allergic reaction. I can only say that I did not suffer any ill effects when I stopped it.

Take care

Kevin

[sweetsusie]

Hi Anapanasati - I have been using Trelegy for a few months now and had no complaints about it, until just very recently. All of the sudden I had a lot of bladder pain and was "leaking" urine! I thought I might have had a UTI (urinary tract infection), but that's not the case...I looked up Trelegy side effects and these are two of them! So, I stopped using a couple of days ago...bladder pain..gone...urine leakage...gone..so it's the inhaler. I'm having no side effects from coming off of it. Like they say: sometimes the cure is worse than the disease. I'll go without inhalers for awhile and see how I do...good luck to you!

[Anapanasati]

Blimey.. I'll keep an eye out for that one! Dignity matters..