Living with NP001: A Skeptic's Story

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StoneLeopard

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I'm usually skeptical about things like this, but through God's grace I've been cured of a disease (with certain medications) that previously routinely killed people in their 30s, so I try to not be entirely closed-minded. But has anyone here heard of NP001? The various ALS forums seem to be buzzing with excitement over this. Apparently, it's a medication that is injected into the spine (I think?) that greatly reduces inflammation around the motor neurons. I believe they are in Phase II clinical trials now and results will be available later this year. Anecdotal reports are very promising (almost too good to be true, which is what makes me kinda skeptical). Anyway, I write this for one reason only, and that's to help relieve anxiety among BFS'ers. I don't know about you, but a possible cure (or at least a strong deterrent) for the nasty makes me feel a lot better -- i.e., my chances of getting it are slim, but even if I did, there might actually be some hope.StoneLeopard
 
Thanks for posting Nickston. I am not familiar with the clinical trials although I have brief summaries about it. I pray everyday that they find a cure for ALS for the sake of its victims, the caregivers and everyone affected by it. Selfishly, I also believe that finding a cure for ALS would essentially cure BFS (at least the anxiety that comes with BFS). But lets all hope that this new treatment finds some success. -Matt
 
This is a great news!! Also a few months ago I read about a new pain killer that doesn't have any side effects and it's not addictive:) Just hope that the big companies will not "slow down" these new possible medications. Here link
 
Laurent,Perhaps cure is too strong a word. But anecdotally, it appears to have restored muscle function in many people, and at the least it seems to halt ALS in many people. You are right that it is still in trials and so nothing has been scientifically proven yet. But I think it is certainly cause for cautious optimism.
 
It is not proven it has stopped the progression of ALS in anyone yet.. Too early to say that. At least it appear that the progression of some patients has slowed down. Anyway, along with Dex., the NP001 is very promising.
 
I have even read from patients that gained back a good portion of speech issues and even grip strength (not perceived but measured), But it seems that the effect slows down 3 weeks after the injections, so it would rather be a life-long issue to take it.
 
Good point Chrissi, at least some of the patients who experienced improvement experienced declines again 3-6 weeks after the last infusion. So this would be a lifelong therapy, going back every few weeks for a new infusion. But some of the patients also reported that with each infusion, the overall improvement was greater than the overall improvement after the previous infusion. Meaning that the effect might be cumulative. In any case, if this is the real deal, going back for repeated infusions every few weeks is no big deal compared to the alternative!This is still all speculation and anecdotal evidence. Need to wait for the results later this year.
 
Just wondering, how can the muscles improve when they are gone (wasted, atrophied)? If they die how do they come back with some infusion?
 
It seems to work on the nerves, not muscles. Weakness appears before athropy because there is no more nerve input, so athropy is not the cause for weakness but it follows weakness. It seems to "improve" the nerves and therefore the input in muscles. Those muscles are not really dead, they are just athropied, and any athropied muscle can get back strength if there is new input. I wonder about how it works on the nerves though, hopefully hey will once give an explanation (if they at all know how it really works)
 

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