My son Francis has DMD and will be 10 next month and is still walking. He has been on a waiting list for a Losartan Trial. Read somewhere that the trial was to get underway in 2008, well 2008 is half over. Does anyone out there know how a parent can contribute to getting a trial underway, if at all? Just looking for some help before it is to late for him.
Suzanne

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Hi Suzanne,

I don't have any words of wisdom but wondered if you have contacted the places where the trials are to take place. Are they conducted by pharm companies or at some univ hosp here in the usa? Who makes losartan? Can you e-mail the maker and find out some info that way? Where is the "list" your son is on for the trials? Do you remember where you read about the trials?

My DMD son will also be 10 next month, still walking too just like yours. If I had a bit more info to go on I would be happy to start looking with you!

cheryl
Hi Cheryl,

I found this: http://www.niams.nih.gov/News_and_Events/Press_Releases/2007/02_02.asp

I think that Dr. Cohn is the one planning the trial.

Ofelia
I believe Dr. Cohn is still moving forward with applying for a losartan trial. There are always bumps in the road along the way, but he is finally getting good support. Hopefully, a trial will be announced sooner rather than later.
I spoke with Dr. Cohn back in March of this year, and he e-mailed me back stating that they hope to begin trials later this year. I don't exactly know what "later this year" means, but like all of you, I hope it is sooner this year than later. Terry Porcaro
Thanks you guys for supplying some information on where to start looking for the trial dates. The article you sent me to, Ofelia, quotes Pat. I think she might be the one to ask so I will do so on her page.

cheryl
How do you enroll for this? Is there anyone out there that is already using this drug and seeing benefits?
I asked for a prescription for Losartan (an ARB) last month for my son and he is now on it taking 25mg/day. He is 7yrs old with no heart problems yet. He has been taking Enalapril (an ACE) since he was 5.

I have not seen any difference in strength but then I did not expect to. There have been no adverse side effects. My hope is that it will help preserve heart function longer and help slow down the muscle fibrosis.
Hi Karen

What is enalapril for? Sorry, I am not too familiar with drugs and sometimes all this is very confusing.
Enalapril is an ACE Inhibitor. This link explains it in detail well. The cardiologist that prescribed it for my son explained that it while his heart was still functioning normally the Enalapril would make it work less harder thus possibly preserving heart function longer.

http://www.marvistavet.com/html/body_enalapril.html
I asked Dr Wong about startign losartan. She indicated that using it for skeletal muscle is not proven and we should wait for the clinical trails. However, if someone is taking ace inhibitors for heart, she said we could discuss with ped. cardio doc about losartan instead.

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