Are there any families on here who's sons are in the eplerenone trial. I was curious if they would share any results they are seeing. I spoke by email with one father and the results to this point were pretty impressive.

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Hi,

What was the result according to this father?I also heared positive results from this trial

Yup it was me who communicated with each of you. I cannot comment on the trial itself. It was double blind and who knows what we were on.

However since my son started taking Eplerenone open label in Sept 2013 as part of the extension trial we have had 1 cardiac measure and 2 lung function measures. All 3 suggest a strong reversal of a downward slide starting many yeas ago.

Cardiologist noticed. MDA clinic doc noticed. Nurse who called me with news that lung function was up in Nov 2013 and again in Mar 2014 could not contain her surprise.

These are not reliable "results". We all know it could be blip, a temporary anomaly, or measurement error. I'm a computer scientist and I've seen seen way too many early successes go south so I remain only cautiously optimistic.

But I will also say that sleep has come a bit easier lately for me. It is great to have something trending in a good direction for once.

David, I am very happy to hear about your son's results and wish him and everyone in your family the very best..

My son had more lung function tests last week. The trend towards improved lung function did not continue on the path we had hoped for, but it still remains essentially unchanged from January 2013. I'll take that!

Please note that the trial doesn't include lung function as primary outcome at all. This is just me looking for clues wherever I can find them.

He is returning for cardiac MRI in September, which is the primary outcome measure of the trial.

Wanted to share this with the group. These are PFT results, 2009-2014. these are independent data points from my son's MDA clinic, with the date when he started open label dosing with Eplerenone. 3 of 4 series are headed down until dosing starts. Same three head back up after dosing.
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Good to hear...stay blessed..
We has another echo today. Third year in a row with stable ejection fraction (60%+) and shortening fraction (30%+). I'm sold

best wishes david for your family...you had mentioned cardiac mri as the primary outcome of the trial right? 

Yes, the OSU trial involves MRI.The echo results are not from the trial but from regular cardio appt. our last trip for MRI in the extension trial is in August

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