Iplex Trials 2010

[dee ter]

Hi Dee here from Ireland My brother was diagnosed 12 weeks ago with ALS spinal onset and I have been reading posts in this forum since that time. I have to say that I get a great lift from the positivity here so thankyou all. My family and I are scouring the net nightly for something to give us hope. I was almost taken in by one or two scams but thankfully reading threads here alerted me to them.
I am looking for any update on the IPLEX trials that I think were going on recently- I found this info on ALSworldwide website. I read posts on this forum about this subject but the last one seems to be New York Times article from 2009. Does anyone have anymore infomation about this drug?:smile:

 

[Al]

If you use the search feature on the bar above and type iplex you'll find lots. It hasn't been heard from much because like so many others it probably didn't do much good.

AL.

 

[Erica]

dee, drug is no longer manufactured.

 

[John1]

Dee,

attached is a link to an interim report on the trial I believe you refer to.

Reading it sends up all kinds of red flags in my mind. The authors claim that most symptoms improved over the first 30 weeks. There is little objective data presented to support the claim. The trial is tiny, only 10 patients, of whom two have already died. I don't know if their symptoms improved before their deaths or not. Two of the authors have been involved in off-beat ALS therapy for years and they always have reported remarkable benefits from whatever therapy they have discussed be it a notorious early stem cell clinic in China (now closed), Chinese herbal medicine, a new stem cell "trial" in Monterrey, Mexico (the only trial I know of where the test subject pays a hefty fee) or most recently, Iplex. Caveat emptor.

John

 

[dee ter]

Thankyou Al, Erica and John. Yes that is the report I had found and was enquiring about. A post on the MNDA forum here in Ireland led me to believe that the trial was recent. After I left the post here I found more information which didnt look too promising. My family and I seem to spend hours on the net looking for treatments and I seem to be going around in circles.

My brother who was recently diagnosed told me weeks ago not to drive myself mad researching this disease too much. He was probably right. But hey, we are slowly getting used to this and I guess we have to get information somewhere.

Again, many thanks for your responses. I seem to be spending a lot of time here.....:neutral::neutral: