One drug that stood out in my youth in keeping my lungs clear and hence me healthy was a product we imported from Europe; Fluimucil. It was a trade name for oral acetylcysteine. It was available over the counter in Holland 30+ years ago and loosened my chest greatly. I took it three times a day as directed by my doctor because that is what CF patients got. In Australia it was not available. I still import it and take it before rides when I feel chesty.
It has a mild anti-inflammatory effect and a virtual instant (minutes) mucolytic effect. It is available over the counter in Europe and Asia and I swore by it. My mother spent from 1978-1990 actively trying to get it known in Australia by translating the brochures, sending dozens of letters and costly samples to anyone she could think of. The CF community was not keen to test my mum's foreign medicine on their children. I think it was the main drug that kept me out of hospitals.
So this week I get a brochure in the mail from my in-laws who just happened to randomly run past a CF function in the USA and picked up a few printouts. One tells me that Oral N-acetylcysteine is going to Phase 3 (definitive trial) trials having just finished the Phase 2 - which is 'human safety and efficacy trial'. This is just ludicrous, unless Oral N-acetylcysteine is different from Oral acetylcysteine without the N. Is some of this valuable CF medicine that is used in Europe finally reaching the rest of the world? Is there some other drugs they should perhaps share info about!
I know that on my ride I will certainly be bringing oral acetylcysteine, in nice black currant flavoured effervescent tablet form!
It has a mild anti-inflammatory effect and a virtual instant (minutes) mucolytic effect. It is available over the counter in Europe and Asia and I swore by it. My mother spent from 1978-1990 actively trying to get it known in Australia by translating the brochures, sending dozens of letters and costly samples to anyone she could think of. The CF community was not keen to test my mum's foreign medicine on their children. I think it was the main drug that kept me out of hospitals.
So this week I get a brochure in the mail from my in-laws who just happened to randomly run past a CF function in the USA and picked up a few printouts. One tells me that Oral N-acetylcysteine is going to Phase 3 (definitive trial) trials having just finished the Phase 2 - which is 'human safety and efficacy trial'. This is just ludicrous, unless Oral N-acetylcysteine is different from Oral acetylcysteine without the N. Is some of this valuable CF medicine that is used in Europe finally reaching the rest of the world? Is there some other drugs they should perhaps share info about!
I know that on my ride I will certainly be bringing oral acetylcysteine, in nice black currant flavoured effervescent tablet form!
1 comment:
Cystic Fibrosis - a new research blog – please help
Hi
After looking at the comments I would like to take this opportunity to invite you to a research blog on Cystic Fibrosis. We thought that our blog is relevant to this discussion.
We are very interested in your thoughts so it would be great if you could have look at the blog and share your Cystic Fibrosis story.
To have a look (and to tell us what you think) please click this link
http://www.thepatientconnections.com/blog.asp?bid=&uid=61
The blog is anonymous and easy to use. Instructions are given on the blog so thanks in advance for your help it is much appreciated.
Best wishes
Belinda
The Patient Connection
Belinda.shale@thepatientconnections.com
Post a Comment