Np001

Status
Not open for further replies.

diagnosed2016

Distinguished member
Joined
Apr 30, 2016
Messages
190
Reason
Lost a loved one
Diagnosis
07/2016
Country
US
State
CA
City
California
Trials are absolutely not for the benefit of current patients, but the current requirements are cruel.
 
Joined
Feb 19, 2017
Messages
24
Reason
PALS
Country
sad
State
asdasdas
City
asdsad
Hi,

its no problem to order the NP001 in alibaba, the labtest is not expensiv. I would do it, but i have no high CRP so it doesn't work for me, right? Or its only so that it work often in high CRP but its the chance that it can also work in normal CRP?

Thanks
 

diagnosed2016

Distinguished member
Joined
Apr 30, 2016
Messages
190
Reason
Lost a loved one
Diagnosis
07/2016
Country
US
State
CA
City
California
Given that the study is for an infusion I would be concerned with how to go about dosing yourself with sodium chlorite bought online!
They think that the people who had good results in the first phrase 2 study had the elevated levels, so they are singling them out for this round in hopes that there are better results
 

Firefly

Active member
Joined
Feb 1, 2016
Messages
47
Reason
PALS
Diagnosis
12/2015
Country
US
State
Or
City
Portland
I'm currently in the Np001 trial. I will have my 5th of 6th infusion the 1st of March.
Unfortunately, I have not noticed any benefits. I took a fall Christmas Eve and fractured my ankle then fell on my church steps about a month ago. Ironically, neither of these falls were ALS related, (go figure). However, it still has not completely healed so I'm wondering if trauma to one's body even if just a fracture can effect the condition of an already precarious disease.

Nikki is correct in one getting benefits of being in a clinical trial, if not only for the experience. At least, in my case it's true. Not only has the medical staff been kind compassionate and very supporyive, but I like getting my FVC checked once a month. Let me clarify that last sentence. I HATE doing the breathing tests but like to know my results on a monthly basis as opposed to every 3 months at clinic. lol.

I am most likely getting a feeding tube next month so I don't know if I would qualify for any future trials.

I did have to sign an agreement that it was understood I would not have access to the drug after the trial. In addition, I wont know if I got the drug or placebo for two years.

In the end it has been worth it. And I would do it again. :grin:
 
Joined
Feb 19, 2017
Messages
24
Reason
PALS
Country
sad
State
asdasdas
City
asdsad
Thanks for your experience! Did you know your CRP? Is the CRP high?

Regards
Hope
 

Firefly

Active member
Joined
Feb 1, 2016
Messages
47
Reason
PALS
Diagnosis
12/2015
Country
US
State
Or
City
Portland
My CRP was apparently just enough to qualify me for the trial.
The coordinator said that was actually good news as those with low levels
tend to progress slower. Hmmmm....not so sure about that. We'll see.
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,374
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Brian gets his test for the CRP level Tuesday. The nurse who is working with him said that the majority of people tested have an elevated level, and they seem to be at all different rates of progression so she herself is curious as to where the "higher level means faster progression" data is coming from. I imagine it is based on some data. As per usual, ALS is the black cat in the dark room who is not there being sought by a blind man. Maybe, just maybe with enough research we can cast a little light.
 

Firefly

Active member
Joined
Feb 1, 2016
Messages
47
Reason
PALS
Diagnosis
12/2015
Country
US
State
Or
City
Portland
The black cat analogy is perfect!
 

old dog

Distinguished member
Joined
Aug 27, 2011
Messages
255
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
City
Scio
I hate to be such a dummy, but what is CRP?
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,374
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
I forget what the initials stand for but it is s blood factor that shows higher levels of inflammation in your body.

Now may I go with a stupid question: is this the same stuff as Tirasemptive? Or is it another drug?
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,374
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Well, THOSE results came fast - Brian does not have an elevated CRP, so he does not qualify for the study. We are fine with the news. If the lack of elevation points to a slower progression, then great maybe we will continue to progress slowly.

Brian is still participating in an MRI study, and we just heard of something I am going to put in its own thread.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,902
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
CRP=C-reactive protein, a marker of systemic inflammation.

NP001 is not the same as tirasemtiv. In theory, they could be used together. Tirasemtiv Phase III results are scheduled to be reported out in fourth quarter. Meanwhile, they are doing an extension trial, signaling there was some benefit shown. So it is further along in the regulatory pathway than NP001, which is still in Phase II.
 
Status
Not open for further replies.
Top