AEG,
Through correspondence with others in team Iplex many stories of positive results have been passed by people taking Iplex. These positive things range from improved breathing, swallowing to minor movement in limbs such as fingers, smiling and facial movement. Although these will be disputed by people on this forum they are legitimate and qualified by video documentation and followed and documented with FRS scores both pre and post treatment by Dr's. In one case a patient who was on full bi-pap had succumbed to pneumonia and was hospitalized, this patient continued taking Iplex under medical supervision in hospital, has recovered from pneumonia and has even come of full time bi-pap. Say what you want but the Dr's are all adamant this would not have been the case under normal circumstances.
Many refuse to post, especially on this forum as they view it too narrow minded and negative to any potential therapeutic that is not endorsed by ALSTDI. They feel it a waste of time and energy and would rather focus on what they are gaining or benefiting than receive a barrage of blind, negative one sided attacks.
Sad that it has come to this.

I still don't know if IPLEX works or not ,nor what is going on with this drug (and the companies producing it)..I'm beginning to wonder if Rod Sterling didn't script this "play".....but what I would like to understand,is why, the Italian Government is paying upwards of $8,ooo,ooo ,to make this drug available to Italian Pals.....if this drug doesn't work?!Manfred

Searching,
No where in my post above that relayed the anecdotal data from clewbcg showing a negative response to IPLEX, did I conclude anything about the efficacy of IPLEX. What my post was showing, was that when those those like you are advocating a drug, you will only report and reuse anecdotal data that favors your cause. And any information to the negative will be ignored, thrown out or explained away as you attempted to do with your most recent post on dosage. Data can't be thrown out just because it is not convenient.

I noticed in the INSMED/IPLEX press release that they stated 12 US patients on the drug now. You had recently stated 13 earlier in this thread. Does this mean that one more person withdrew or died? And if so how does that figure into your evaluation? And when was that little bit of information going to be put out by you? If more people drop out will you actually bother to report that or will you only relay anecdotal evidence as you did above, ones that gives good accounts?

I had also noticed that the INSMED/IPLEX press release stated there are 70 patients total taking IPLEX including the 12 in the US. The implication was that most of the remainder were the ones in Italy. That is at most 58 Italian patients and probably a few less (assuming some other patients around the world). You yourself had stated earlier on this thread a reference to 160+ patients that had enrolled in the Italian trial. What does THAT say about IPLEX? I will caveat that though because I don't find the data that you relay as reliable.

Searching, I've seen this scenario twice before from the same advocate, and having the same type of indignant and outraged defenders like you that felt compelled to insult and attack those that were openly skeptical. Same song, verse 3. What is hard for many patients to understand or accept is that in general people are not typically skeptical or critical of the anecdotal posts that claim improvements or a change in progression. It happens all the time. What they are skeptical of are the conclusions drawn by those advocating the treatment and the way the information is cherry-picked and then relayed to other PALS as one glowing package of good news. Such is the post that you gave above and also the summary of the case for IPLEX found on ALS-Worldwide. If those advocates would actually bother to present a balanced summary that included all relevant information many I doubt would feel compelled to critique it. But balanced summaries don't sell, do they?

As for your questions on efficacy, it is correct that only a double-blind clinical trial would be able to establish for sure whether IPLEX has some efficacy or not. But as PALS, we should be able to conclude whether a drug has a strong effect in most of the people taking it based on a closely watched study like the one in Italy. So far, I'm not seeing an indication that such has occurred. And by ONLY reporting on positive anecdotal data, and ignoring and then later discounting anecdotal data to the contrary, your efforts are trying to give just that impression. It worked on relatively uncontrolled boards like Braintalk. But I understand your frustration that it doesn't seem to fly here, at least not without a challenge.

I don't think it is worth spinning our wheels regarding IPLEX anymore in the first place. Unfortunately for PALS who would have liked to give it a try INSMED can't make it any more and they have the only patent to this formulation which is basically a combination of free IGF-1 with BP-3.

IPLEX looks like it will soon be locked up and shuttered in the vast warehouse of drugs that cannot be accessed by the medical community or patients for a long time. It reminds me of the famous scene at the end of the Raiders of the Lost Ark where the Ark is boxed and put in a massive warehouse to be "studied at a later date" when all it will probably ever do is collect dust.


Dr. McCarty,

Your answer about IGF-1 by viral delivery mouse trial has been the same for some time now. Have you actually tried it in the mouse and gotten a negative result? If not do you have an idea on when you guys will be able to get it in the mouse so that a more definitive statement can be made? Thanks.

AEG,
I fear that your statement is correct. Unfortunately regardless of what any actual effects of Iplex we will probably not be able to get it as it looks like no one will make it so no one can get it. Some time you just loose no matter what.
As to Wayne/Dr Mcarty thanks for proving my point.