Starting Tirasemtiv Trial

[njk0407]

Hi. Just wanted to let you know that my husband will be starting the Tirasemtiv trial next Monday. The first 2 weeks are open label. I will keep everyone updated on how he does. We are also going to NIH on July 27th to volunteer for the HERV-K. Natural History Study. He will be donating blood and spinal fluid and they will run his entire genetic panel for us so that is good.

-Nikki

 

[Nuts]

Congratulations, Nikki! I'm so glad for you both. Please keep us posted!!

Becky

 

[affected]

That's great Nikki, we are all grateful to all PALS who are able to be admitted into trials, you are my heroes, please tell your PALS that!

Please do keep us updated and thanks again

 

[njk0407]

Thanks Becky and Tillie! I will keep you posted and Tille, I will let my husband know Thank you!

-Nikki

 

[njk0407]

Tillie,

I bought your book I started it, but I haven't finished it yet. I think I'm going to have to read it little by little. Very informative, but also heart breaking!!! You truly are an AMAZING person!!!

-Nikki

 

[affected]

Take your time - some say they couldn't put it down, other say they have to do it a little at a time - both are right, depending on where you are at ..

 

[njk0407]

Hi,
Just wanted to give you all a quick update. My PALS finished the 2 week open label phase of the trial and has now been randomized and will continue on for 50 weeks. He did really well with mild side effects such as dizziness and fatigue. He has leveled out pretty much at this point. We went to NIH, which was fantastic. We learned a lot of information about his disease and how he is doing overall. He participated in their volunteer study. NIH is trying to establish their assay for their HERV-K study. Keeping fingers crossed he has a high level of HERV-K. NIH is also doing his genetic testing, they are testing for the 17 known genes in ALS. We had to meet with a genetic counselor before we agreed to it. NIH told us that they have 12 people who have HIV and ALS. It appears that when treated with the HIV drugs, their ALS progression slowed down drastically and some even were stalled. One person has been living with the disease for 11 years and another for 5 years who apparently have had very minimal progression. Almost makes us want to start on HIV drugs, although he doesn't have HIV nor do we know a Dr. that would prescribe the drugs. We also went to John Hopkins ALS clinic while we were up there. We met with Dr. Maragakis who was very nice and informative. My husband enrolled into 2 volunteer studies they are doing. One is a "biomarker" study, Answer ALS, and another is s a "scratch n sniff study". I will continue to keep you posted

Thanks,
Nikki

 

[azgirl]

Thanks for participating, and also for keeping us updated.

 

[affected]

Thanks Nikki, the work you guys are doing with trials and even researching and considering them is beyond valuable xxx

 

[acars12]

My wife started trials on July 29th she experienced some dizziness only in the morning and found that if she had breakfast first then waited the 2 hours she did much better and the dizziness stopped. She is now randomized and 2 weeks in still experiences some dizziness we think this may be an indication that she did not get a placebo. Yes we hope so. well tomorrow is our first visit to the Duke clinic after being randomized. She is my hero and keeps fighting this ALS. I honestly don't know if I can be as strong as she. I pray for a break through for all of us.

 

[kitbud]

Hello, I am curious as to whether or not anyone else has experienced this while in the trial. During the two week open label phase I had no side-effects other than a little bit of dizziness but this seemed to get less as time went on. During the two week open label I tripped and fell down some stairs. I partially tore my rotator cuff and got a lot of bruises. Actually everyone one was surprised how soon I was up and going again. I have since been started in the randomization phase. I recently had to stop taking the trial drug for 48 hours. I was impulsive, disinhibited and just generally let's say care free. But even more exciting I had regained most of my muscle strength and didn't feel stiff or tired. Physically I had significant improvement and everyone says I am much happier but close friends and relatives are worried at how fast I am talking sometimes and that I am going to over due it. I am basically physically doing everything I could pre-diagnosis of ALS. When I think back to the two week open label phase I can now see that I was feeling this same way after taking the trial drug for about four days. So good in fact I was feeling overly confident which led to my fall. I was only slowed down for about two days with the fall? I am curious to hear what others have experienced thus far?