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Nerispirdine?
Posted: Wed Nov 12, 2008 9:18 am
by suzq77
Anyone heard about a study for Nerispirdine to improve walking ability/speed? My neuro's office (Axiom Clinical Research) is recruiting candidates and I think I'm going to do it.
I think it's a potassium blocker like 4-ap/Fampridine.
It's a double-blind placebo controlled study but I don't know what phase it's in. There are four possible doses:
1. Placebo
2. 50 mg
3. 100 mg
4. 200 mg
So there's a 3 in 4 chance I'd get the drug, which is pretty good odds...
Anyone have any more info on this study?
Thanks!
Susie
Posted: Wed Nov 12, 2008 2:43 pm
by Sharon
Susq -
If you "google" Nerispirdine it you will find it is for visual acuity not walking. It looks to me like you need to have had Optic Neuritis in order to get into the trial.
Sharon
I'd already googled it before I came to this site
Posted: Wed Nov 12, 2008 3:54 pm
by suzq77
Actually, since I posted my message I got the informed consent from the study coordinator. So I called her and while we were on the phone I googled Nerispirdine and that was the only result.
But the informed consent I have is not for optic neuritis.
hp184 is the same thing
Posted: Thu Nov 20, 2008 5:31 pm
by suzq77
I googled HP184 (which is nerispirdine) and a post on this site from dignan came up in the results:
dignan wrote:Here's a drug (Sanofi-aventis' HP184) in the early stages that might be helpful for MS and other conditions.
Tireless quest for a cure, Lorenzo-style
Globe & Mail - January 9, 2006...
Of particular interest is a drug called HP184, a sodium and potassium channel blocker that has been tested on spinal cord patients. When Jacob's parents brought the drug, made by Sanofi-aventis, to the attention of doctors, none had heard of it.
"They're very proactive, they were actually the ones who first told me about HP184, I didn't know about it until then," Jim Garbern, associate professor of neurology at Wayne State University School of Medicine, said in a telephone interview from Detroit.
But when Dr. Garbern, who specializes in PMD, heard about it, he immediately started to think of it as a potential treatment for PMD and more common diseases, such as multiple sclerosis.
Dr. Garbern said he is currently in talks with Sanofi-aventis to see if HP184 might help compensate for abnormalities in myelin.
"If animal studies are successful, the hope would be, we could know within a year," Dr. Garbern said. "And then we could probably pretty rapidly start testing it in human patients."
Jacob's parents want their son to be part of the research trial, provided the drug is safe. They would also like to obtain the drug, at some later time, under Health Canada's special access program.
Under that program, patients can, in some circumstances, get access to drugs before they have been licensed for approval.
"Although it is unusual to receive requests for products that are in earlier stages of development (pre-phase III) we will consider such requests if there is a good clinical rationale, data available to support the proposed use and no other regulatory option to provide access," Health Canada spokeswoman Jirina Vlk said.
Through a group called Jacob's Ladder, part of the Canadian Foundation for Control of Neurodegenerative Disease, they are trying to raise $100,000 (U.S.) -- the estimated cost to run the clinical trial on HP184. That amount will cover the testing on animals and help kick-start the study on patients afterward.
Today, Jacob attends Zareinu Educational Centre of Metropolitan Toronto, a Hebrew day school for children with special needs, located in Thornhill, north of Toronto.
There, he learns how to use a special switch, so he can communicate with others.
"If he doesn't get these tools, he's dependent on adults to read his mind," said Barbara Nash Fenton, his speech language pathologist at Zareinu. "I'm setting up an alerting device for him to say 'I need help.' "
http://www.theglobeandmail.com/servlet/ ... TPScience/
I've also found some feedback on research participants who have spinal cord injuries and the one adjective that keeps popping up is "astounding". don't want to get too excited, but...
Posted: Tue Jul 28, 2009 6:23 pm
by eburgdave
I have been in a trial of nerispirdine and just finished my first week taking the drug, or possible placebo I guess. So far no impact whatsoever, but I didn't expect any this soon either. I have RRMS, first symptoms in 1990, minor problems and undiagnosed for 10 years. I've had difficulty walking since an MS episode in 2001, officially diagnosed January 2002 and have been on Copaxone since November 2002, with no changes in my MRI since I started drug therapy. I use a cane if I have to walk more than about 100 yds. and at about 1/4 mi. my legs quit altogether. Has anyone else had experience in this drug study? I'm curious what I might expect, if anything.
Does anyone have feedback on the recent nerispirdine trial?
Posted: Thu Apr 15, 2010 2:20 pm
by Elsie
I understand that Sanofi will begin a large phase 3 nerispirdine trial for MS walking shortly. I was curious to hear the experience of those who participated in the recent MS walking trial.
Posted: Thu Apr 15, 2010 4:31 pm
by eburgdave
I was in the Nespirdine walking trial from June through November last year. I still don't know what dosage I was on. I started noticing a difference after about 4 weeks on the trial dose and by 6 weeks I experienced marked improvement. At one point when I walked around some slower walkers my wife actually asked me to slow down. That hasn't happened in 10 years. Anyway, the good news is that it worked very well for me. I was disappointed when the study ended. Within about a month I was back to my old self, limping, shuffling along with a cane. Empyra, a competing drug, got FDA approval back in February I think. I'm currently in the process of getting a prescription and checking to see if my insurance will pay for it. Unfortunately they usually deny things they deem "quality of life" related and not "medically necessary." Since I can "walk" improving my ability may not meet their standard for coverage. Such is life...
E'burg Dave
Nerispirdine seems to work...
Posted: Fri Apr 16, 2010 5:16 am
by Elsie
E'Burg Dave thank you for your reply. I would be curious to hear, if you succeed in getting reimbursement for Ampyra. If that does not work, I understand another nerispirdine trial will begin shortly, so you might get another chance to try it.
Posted: Sat May 08, 2010 11:38 am
by Rialynn
Hi
I was also in the walking trial September to Dec. I spoke to my Neuro. who was doing the trial. He told my that the company had reviewed the results and it was found Negitive. That meant that there want enough or a noticable difference between placebo and medication. I did find that the med helped over all. Does any one know any more infomation?
Posted: Mon May 17, 2010 6:52 am
by SCGirl
I have been taking Ampyra for a little over 2 weeks. No real noticeable difference so far, but I am hoping that it just hasnt built up in my system. As far as insurance, mine did cover it. Good luck to you all!