Roflumilast: Has anyone any experience... - Lung Conditions C...

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Roflumilast

BelleBea profile image
10 Replies

Has anyone any experience of using Roflumilast? I know that it is not "licensed" as a prescription drug in Britain unless you are taking part in a clinical trial, but is used in Europe and America.

The 'obstructive' element of my COPD seems to be getting worse and I wondered if it was worth getting a private prescription to give it a try.

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BelleBea profile image
BelleBea
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10 Replies

Can't help I'm afraid but I saw stilltruckin put something on about this a couple of weeks ago which looked helpful healthunlocked.com/blf/post...

stilltruckin profile image
stilltruckin

ncbi.nlm.nih.gov/pubmed/250...

Quote:

'. . . This analysis shows that patients treated with roflumilast to reduce exacerbation risk may also experience small but significant improvements in dyspnea, with accompanying improvements in lung function.'

BelleBea profile image
BelleBea in reply to stilltruckin

Hi Stilltruckin. Thanks for your reply and many interesting posts.

I noticed that you started using this medication about two years ago. Are you still using it? And have you any observations about its effect?

I weigh 44kg so thought half a tablet would be sufficient.

stilltruckin profile image
stilltruckin in reply to BelleBea

Hi BelleBea. Yes, I'm still using roflumilast. I figure half a tab is enough for me, particularly in light of the cost. In a clinical trial 250 mcg was 70% as effective as the full 500 mcg dose for FEV1 improvement, and a lower body weight means a lower dose requirement.

Roflumilast isn't a bronchodilator, so there's no noticeable effect in the short term. I did feel some improvement within the first couple of weeks, but that may have been the placebo effect for all I know. Now of course I just feel 'normal' and trust it's working as advertised, at least to some extent.

I don't fit the official target patient type which is people with chronic bronchitis and frequent exacerbations, however: ncbi.nlm.nih.gov/pubmed/264...

BelleBea profile image
BelleBea in reply to stilltruckin

Thanks for the information Stilltruckin.

I don't fit the 'official target' either. For nearly two years I had frequent infections (excacerbations) involving many anti-biotics and steroids but since discovering carbocysteine, postural drainage exercises and using Azythromycin daily I have got rid of the bugs and have not had an infection for two years.

Will probably give it a go for a month or two and see if it helps.

By the way, I too had trouble with my sinuses for most of my life. I have no problem with these now since using Neilmed sinus wash - carbocysteine probably helped with this too.

Best wishes.

yorkie70 profile image
yorkie70

Hi BellaBea, the brand names for Roflumilast are Daxas and Daliresp. I take 1/2 of a 500 mcg tablet every other day as prescribed by my Dr. I have not had any side effects so far.

Breath easy exercise often.

Cheers Dave from the LoS.

rudmandjnanny profile image
rudmandjnanny in reply to yorkie70

so have I no side affects so far i think it does curb appetite.

BelleBea profile image
BelleBea in reply to rudmandjnanny

Ah, but does it help your breathing?

BelleBea profile image
BelleBea in reply to yorkie70

Thanks for your reply Yorkie. Have you found any improvement in your condition since taking Roflumilast?

Am seriously considering giving it a go.

yorkie70 profile image
yorkie70 in reply to BelleBea

Hi BelleBea, The Doc put me on Daxas as I had a bad run of infections. I have been taking it for about 4 months and no sign of problems.

Cheers. Dave. from the LoS.

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