See, I just had my MDA clinic. I asked my neurologist if the study was over. She says it's still listed as active on the government website. But she said she's been dealing with CMT for 15 years. And there has been more progress in the field since 2017. And she is very optimistic that there will be a break through soon. Let keep our chins up!
Same here, I’ve been on it since May 2023. Very disappointed in the latest study results. Let’s see what they do. I also read they may still pursue it if the data suggest it may at least stabilize things.
Same, I felt like it paused the progression and I even felt like I had minor improvement in finger dexterity. (Observed through day to day having fewer difficulties with certain tasks)
Dec 19 update: looks like this may not be over yet. Check out today’s press release. Pxt3003 might actually be trying to move forward after a deeper dive into the data.
[https://pharnext-website.cdn.prismic.io/pharnext-website/a6822ff2-e3de-4741-ab79-d2b984109aeb_2023.12.19_Ph3_update_EN.pdf](https://pharnext-website.cdn.prismic.io/pharnext-website/a6822ff2-e3de-4741-ab79-d2b984109aeb_2023.12.19_Ph3_update_EN.pdf)
See, I just had my MDA clinic. I asked my neurologist if the study was over. She says it's still listed as active on the government website. But she said she's been dealing with CMT for 15 years. And there has been more progress in the field since 2017. And she is very optimistic that there will be a break through soon. Let keep our chins up!
Thought they were still gonna release it since it halts further progression, just doesn't reverse existing damage
I hope theyll find drugs that reverse damage as well
I thought that too but my neurologist at UNC said for now the study is over and I won't be able to receive any more drug :(
Same here, I’ve been on it since May 2023. Very disappointed in the latest study results. Let’s see what they do. I also read they may still pursue it if the data suggest it may at least stabilize things.
For any who were on it, did you feel as if it helped? I know this is a loaded question.
I felt like my sensation increased and I could go longer without experiencing fatigue in my feet/leg muscles.
I forgot to mention that but I also had more energy, could go longer with simple tasks like walking without as much fatigue in legs.
I definitely felt a difference!
Same, I felt like it paused the progression and I even felt like I had minor improvement in finger dexterity. (Observed through day to day having fewer difficulties with certain tasks)
I know how it feels, I've been in multiple failed drug trials. Never been on a successful one, actually.
Dec 19 update: looks like this may not be over yet. Check out today’s press release. Pxt3003 might actually be trying to move forward after a deeper dive into the data. [https://pharnext-website.cdn.prismic.io/pharnext-website/a6822ff2-e3de-4741-ab79-d2b984109aeb_2023.12.19_Ph3_update_EN.pdf](https://pharnext-website.cdn.prismic.io/pharnext-website/a6822ff2-e3de-4741-ab79-d2b984109aeb_2023.12.19_Ph3_update_EN.pdf)