Friday, November 14, 2008

this was posted on the website --

this is from my old doctor
Unfortunately, this is one of those areas where the hype on the internet as really spun out of control and is creating a lot of misconceptions around IPLEX The most important misconception is that IPleX works. There is no good data to support this. Case reports in ALS are notoriously unreliable (the disease is tremendously variable across patients). I have told you the minocycline story...a drug we all thought would work in ALS and had under study. While it was being studied many patients decided to take it on their own, outside the study, at least in part due to dramatic case reports of patients stabilizing or improving on it. When we finished the study we found that patients taking the drug actually progressed significantly faster than those on placebo! The active ingredient in IPleX is IGF-1. This has already been studied in 3 large double-blind randomized controlled trials and none really showed a significant benefit. There is also a binding protein in IPleX. It isn't clear how the addition of this should make IPleX work better than IGF-1 alone. Despite the above, the Italian Gov has mandated that PALS in Italy be allowed to try this drug on a compassionate use basis. This isn't meant to be an endorsement of efficacy...but it is being taken that way by PALS on the net. Many of my colleagues and I disagree with this decision for several reasons. Imagine if our Gov had decided to hand out vouchers for minocycline as a treatment for ALS?? We would never have been able to get anyone to sign up for the trial and thus never known that it was actually hurting people. There is a large pipeline of very exciting compounds coming into ALS trials. Eventually, IPLEX will probably be subject to such trials. Based upon what I have stated above about IGF-1, personally, I would rank IPLEX near the bottom of the priority list of these agents. Stay hopeful, but for the right reasons! If you want to go to DC, come to National ALS Advocacy Day in the spring with us!!

1 comment:

Anonymous said...

I would exoect nothing else from the old Doctor , there training leaves little room for any other tpye of comment . I hope he doesn't have the death sentence of ALS to deal with . We've been waiting for Help for over a 100 years . Sorry that we can't wait for what he think's may be acceptable .
This is an FDA approved Durg , its side effects are know alone with its benefits . There's little to loose by trying IPLEX and every thing to gain .