Hi,

Our son has had not side effects and his ejection fraction has been in the 50s and his cardiac MRI has been stable for several years. he will be 23 in October.

Sorry that took so long! I don't get on this site very often. I normally am in the DMD facebook groups. You can email me at loriware@gmail.com with any questions. I would be happy to answer.  Lori

Hi Moein

I am eagerly waiting for yr comments on losartan . Last week I just consulted my son's neurologist abt using Losartan for him who is 4 yr old and not on any steriods . She said it is ok as far as safety issues are concerned , but before prescribing ( as losartan here in India is available only against prescription ) she would like to know more abt it from those as young as my son  who are already using it , so just remembered u as your son is not very old , he is just around 6 yrs if am not wrong . Further she would even like to put it before the ethics committee of her hospital and start systematic clinical trial with losartan on young DMD kids . But to do all this she needs some more data . She is ready to think out of box and take up the challenges .

Would appreciate hearing from u at earliest in this regard

Rgds Ambrish - email id matex1884@gmail.com

Hi Moein

Just read yr below comment on Amrit's page . Just want to know more abt Losartan . My email id matex1884@gmail.com . My 4 yr old is DMD . Doctors here in Mumbai India think that he does not require steroids at the moment . So we are thinking of some other options to slow down the progress including idebenone . Has exchanged some posts with Joshua's Mom abt idebenone as well watched yr comments on it . If u can upbreast me abt losartan it will be really nice of u

Thanks Ambrish

At 2:53pm on April 6, 2011, Moein said…

Hi,my son is about 6 years.He is on the waiting list for this trial.we are from London ON where the ACE 031 is being conducted.I called my son's neurologist who is also running the trial here,and he told me that my son is supposed to enter the trial on June.I had the impression that they will go on with this trial.Moreover,It seems that this drug is working.Anyway,I am going now to get more news and if you like I can provide you with the updates.

My son uses:DFZ,ECGC,LOSARTAN (ON MY OWN),Vit D,fish oil,multivit,Coq10,Taurine(aminoacid),Calcium.

I highly recommend Losartan,and I bet that it might stop fibrosis+reduce the side effects of DFZ.

I do everything I can do then rely on God because doctors and medicine are just causes in any treatment,but God is the CAUSATIVE to this treatment because he is the omnipotent and merciful.

Keep the hope.Ii becomes closer

http://community.parentprojectmd.org/profiles/blogs/ace031-study-terminated-what

Above is Pat's blog discussing the ACE-031 termination, i hope this answers your question.

Regards, Leeandra

Hi Moein,

I don't know if this drug is available in Israel. How old is your son? I give mine (wich is 3 and a half) green tea extracts, reishi, fish oil and nigella oil. A current study will shortly determine the efficacity of green tea, see the clinical trials site. Have you heard about the Pr. Tremblay's meganucleases technique? It gives much hope. All the best,

Keren (from Nethanya).

Hi Moein

You can get everything in Israel also deflaz but I believe we import it from Europe

Thanks Dori

He had three nose bleeds over the three months on ACE31.   One was minor, two were pretty serious gushers. 

I think they have put a hold on the trial to see why they are getting nose bleeds and if anything else is going on that was not expected.

We too were thinking of losartan but then got sacred as he aleardy taking 2 medication. It would be great we could update us on ACE trail. Thanks again.