Hi,dear parents

Any parent out there has any news on the progress of the Spironolactone/Lisinopril research activities.I have been trying to get in touch with the research teamat Ohio State University but without success.Thank you.

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my son is in the trial at Osu. From what we've been told the trial is running well, fully enrolled and on track to release Pirelli results around March 2014. my son has seen no benefits but could very well be on placebo so that does not worry me.
my hope is that in 2014 they will start extension trial that is open label.
oops.. meant to write PRELIMINARY in last comment not Pirelli

also should mention that the team at OSU is WORLD CLASS. Dr raman and team truly recognize the urgency of this work. I don't get same impression from my own clinician so much appreciated!

David, what is the dosage of drugs boys get and how are they submitted during day?

25mg pill (very small) once per day

25 mg pill spironolactone? how about the lisinopril?

David said:

25mg pill (very small) once per day
ok need to explain this carefully... there are actually 2 trials by same group, one at osu and one at Cincinnati children's.

the trial at Cincinnati is testing spironolactone/ lisinopril combo. the trial at osu is testing eplerenone which is a very similar combination, believed to operate on same basis in the body, but with fewer side effects. We are in the Eplerenone study.

Great news to hear your son is in the trials,David.The Eplerenone is being tested as a combo with Lisinopril or just by itself?From your clarification, it reads as if it is on its own.Thanks.



David said:

ok need to explain this carefully... there are actually 2 trials by same group, one at osu and one at Cincinnati children's.

the trial at Cincinnati is testing spironolactone/ lisinopril combo. the trial at osu is testing eplerenone which is a very similar combination, believed to operate on same basis in the body, but with fewer side effects. We are in the Eplerenone study.
Eplerenone is tested alone in this trial.

Let us pray and also give the researchers all the encouragement in this long struggle.We truly value their efforts in this battle for our sons.Thanks David for the clarification.

Thank you David.
buried deep in the ppmd conference info is the a better description of how Jill-fotrneys work dovetails with Dr Raman's.

https://www.duchenneconnect.org/index.php?option=com_content&vi...

The summary list of all the products in the DMD research pipeline gives me so much hope.Soon,something is bound to come through.Thanks David.

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