finished my talampanel trial

Status
Not open for further replies.

tajmom

Distinguished member
Joined
Apr 4, 2009
Messages
138
Reason
PALS
Diagnosis
09/2008
Country
US
State
VA
City
Fairfax
One year, seven trips to Baltimore, many needle sticks, numerous questionnaires and some good crabcakes later, I have completed my talampanel trial. Hoping that a) I haven't been on the placebo all this time and b) this stuff turns out to have some efficacy for humans! Now I will be on the "real" drug til the entire trial is concluded.
 
Has it helped in any way?
 
I can't really tell. I am definitely weaker in arms and legs than I was a year ago, but on the other hand I still don't have any breathing or swallowing issues so who knows? I could have been on a full dose, half dose or placebo, but i don't know which yet.
 
Thanks for the update..always interesting to hear about people's experiences with trials. Thank You for participating!
 
I cant believe i have been on here since 2006!
 
My son Johnny, age 19, has been on a Talampanel trial out of Forbes Norris ALS Research Center in San Francisco. We had the option of participating in the trial out of Johns Hopkins in Baltimore but chose Forbes Norris since we live on the west coast.

He has his second to last clinic visit related to the trial this coming Monday. We were told that the drug company was dragging their feet as to whether trial participants would receive the actual drug after their participation had ended, after the trial was over, or even at all.

We have nothing to compare his progression to, other than the ALS progression before he began the trial in March 09 or so. Based only upon that, it doesn't appear the Talampanel has been the slightest bit effective in slowing the effects of ALS. He's considerably farther in progression than he was when he started the trial.

There are many areas where he shows diminished physical abilities. Most recent is his speech beginning to slightly slurr, or sound 'thicker'. He has lost muscle mass throughout his body. His shoulder blades are showing through his shirt and he's lost about 25 pounds over the last 3 months or so.

It will be interesting to see if he's been on a placebo or the actual drug. I hope those who are actually on the drug are seeing encouraging results.
 
I'm sorry Valya that Johnny didn't have better results. Hopefully they'll come up with something soon.

AL.
 
Thanks for the updates about the trial.

Valya, I often think of Johnny, and my partner asks after him. He is not a member here, but remembers Johnny due to his guitar playing (I must have mentioned it). My partner too started with a hand, and noticed first symptoms when playing the bass and the guitar.

Dani
 
Valya,

I've often wondered how Johnny has been doing; thanks for letting us know about his participation in the drug trial. I'm sorry he didn't experience more positive results so far.

Zaphoon
 
I saw this recent article at the Science News site regarding talampanel and I thought I would post it unless someone else has already.

Here are the first couple of paragraphs from the article and the link for the complete report.

"ScienceDaily (Jan. 14, 2010) — A drug already used to treat symptoms of epilepsy has potential to slow the muscle weakening that comes with amyotrophic lateral sclerosis (ALS), scientists report after completing a Phase II clinical trial -- an early, small-scale test to show if the drug works and continues to be safe.

A report online December 4 in the journal Amyotrophic Lateral Sclerosis says the drug talampanel showed some ability to slow the loss of major daily life activities such as speaking, walking and dressing that typically slip away as the disease progresses. The drug is a member of the benzodiazepine family -- anti-anxiety and muscle-relaxing agents that work in the brain and spinal cord. The study, by a scientific team from Johns Hopkins and Indiana University, reveals there's enough benefit from this new use of talampanel to propel it into larger trials that will definitively tell its worth."

The link: New ALS drug slips through telling Phase II clinical trials
 
Thanks for posting the article! That is about the Phase II trial they did some years ago which led to the Phase III trial going on now. It does sound promising...
 
Status
Not open for further replies.
Back
Top