Daxas/Roflumilast

[skate4life]

There have been 2 reports of people doing better by starting at a lower dose and schedule. I started at 1/2 tab (250 mg) every third day for 3 weeks. Then added one more 1/2 pill and worked up to every other day. It took 6 months to get to 250 every day. A couple of times I tried a full tab but the nausea was too severe. Amazing at the difference. I have been on it for over a year now and it has made a huge difference - I was getting an exacerbation every 4-5 weeks. I did have an issue with frequent BMs in the morning after taking it but by noon I was fine....now it only happens once every 3 weeks. I am retired so it has not been an issue for me. More recently I have had a couple of nights of insomnia (another known effect) but it was not a big deal for me. Taking it with/without food did not seem to make a difference.

If you can decrease your dose & schedule it may be worth it for you to try and stick it out. I am breathing better and exercising much more. Talk with your doctor about trying the lesser dose for awhile.

[gnott]

I have been taking the Brand Daliresp (USA) for  four years or so. Forgot when I started.

Can back up skate4life 100%.

That was exactly my experience - GI side effects (diarrhea, constipation, ...) - when I first started taking the drug. But I was sufficiently warned. Unfortunately many are not and have even worse effects than me. Some can never tolerate it, whether physically or mentally. It has a very bad rep in general for those reasons. However, there is an equal number that can take a full dose from day one and wonder what all the fuss is about. (Smile)

Everyone's reaction is extremely varied.

After a week of misery, I went to a half-dose - which isn't easy as Daliresp is a very tiny pill to split. (Don't know if Daxas is larger.) Then I even went to skipping days now and then. Later on when I was taking 'halves' well I would slip in a full 500 mg for a day. I was lucky as it took me only about two and half months. Also I experimented with various times of day - I found I did best if I took it early morning.

What anyone needs to do to work up to a full dose is also extremely varied.

One may ask Why On Earth go through that? The answer for me was the same as skate4life - I was having 3 to 4 scary exacerbations a month and landing in the ER practically every month. Regular meds were NOT controlling it. I was ready to try ANYTHING! After only about two months I discovered I was not having those extreme exacerbations and the few I had were milder and easier to manage.

Definitely talk to your doctor first. I was lucky because my doctor had already warned me and we had discussed the alternative dosages befor I started.

 

[skate4life]

Thanks Gnott for agreeing and expanding on the issues of Daliresp (USA Trade name for roflumilast) Jean Romes , a well known poster elsewhere, was the one that told me how Europe was starting people on the half dose. At first it was recommended for people with a lot of mucus so I didn't think I would benefit...I don't cough or have mucus, just severe inflammation & azithromycin did not work for me as an anti-inflammatory. In 13 months I have had only one exacerbation (July) that I needed a prednisone burst + azithro for 5 days. Not having to do a pred burst so often has greatly made my life easier.

The most recent study says 250 as a steady dose does work for a number of people but they don't know yet, past one year, if it will continue to be effective.

Thanks for your contribution and I hope the 'guest' comes back to tell us their new experience and if we helped him make a decision along with his doctor. Mine did not know about the 250 dosing and was resistant (you know, the internet stuff is crap attitude) but I did it anyway and glad I did.....and it was reported via our government's PubMed site for professional articles.