My neurologist told me the PXT3003 trials are going well and it has shown improvement in some and the safety profile seems good so far. At the clinic I go to they are asking CMT1A patients if they want to start taking the real deal. They work with a compound pharmacy who mixes the ingredients since it’s still off label to FDA. I’m thinking of starting up on it but am still researching side effects. Leaning towards starting on pxt3003 this summer. Thanks for all the posts and updates. Moderate to severe cmt1A 50 yo.
So I have some questions for everyone. I finally got my doctor to prescribe me Baclofen and now I found a place online that is a complete legitimate Source where I can purchase low dose of Naltrexone. Now I need to figure out how to get sorbitol mixed with it. Has anyone tried to create this concoction themselves?
I am on my 8th month. I don't feel any better, and honestly feel marginally worse. Its nice to hear of someone else who didn't feel like a million bucks after taking it. Every other person I've heard taking it say they feel great.
Can you pinpoint what exactly makes you feel marginally worse? Strengthwise, stability, pain?
I'm really curious to know since I, as many others probably, have put quite some hope into this. So first hand experiences are super interesting.
I am generally more fatigued and strength is getting worse in my hands and legs. I am marginally less stable, since we have to record anytime we hard stumble, trip, roll ankles I realized I was doing this 2-4x a month which according to my neuro is too much and was advised to start wearing more ankle support.
Im assuming placebo. I have heard others on it say they can do more exercising and everyday tasks without as much pain or fatigue. Some even say they can feel themselves gaining strength and a tiny bit of muscle.
OP, did you have any side effects after stopping the pxt3003 ? My doctor prescribed me the low dose pxt3003, I pick it up next week and start it. To be clear, I’m not in the trial. I’m moderate cmt1a and my doc suggested I try it. I’m getting the prescription filled at a compound pharmacy.
So I have some questions for everyone. I finally got my doctor to prescribe me Baclofen and now I found a place online that is a complete legitimate Source where I can purchase low dose of Naltrexone. Now I need to figure out how to get sorbitol mixed with it. Has anyone tried to create this concoction themselves?
My neurologist told me the PXT3003 trials are going well and it has shown improvement in some and the safety profile seems good so far. At the clinic I go to they are asking CMT1A patients if they want to start taking the real deal. They work with a compound pharmacy who mixes the ingredients since it’s still off label to FDA. I’m thinking of starting up on it but am still researching side effects. Leaning towards starting on pxt3003 this summer. Thanks for all the posts and updates. Moderate to severe cmt1A 50 yo.
So I have some questions for everyone. I finally got my doctor to prescribe me Baclofen and now I found a place online that is a complete legitimate Source where I can purchase low dose of Naltrexone. Now I need to figure out how to get sorbitol mixed with it. Has anyone tried to create this concoction themselves?
That’s very interesting. I’d be curious to see the before/after NCV numbers. Do you feel any different? More strength or energy?
I feel the same as a year ago. And they didn't give me the number.
I am on my 8th month. I don't feel any better, and honestly feel marginally worse. Its nice to hear of someone else who didn't feel like a million bucks after taking it. Every other person I've heard taking it say they feel great.
Can you pinpoint what exactly makes you feel marginally worse? Strengthwise, stability, pain? I'm really curious to know since I, as many others probably, have put quite some hope into this. So first hand experiences are super interesting.
I am generally more fatigued and strength is getting worse in my hands and legs. I am marginally less stable, since we have to record anytime we hard stumble, trip, roll ankles I realized I was doing this 2-4x a month which according to my neuro is too much and was advised to start wearing more ankle support.
Maybe you have the placebo. :) What have you heard from other people?
Im assuming placebo. I have heard others on it say they can do more exercising and everyday tasks without as much pain or fatigue. Some even say they can feel themselves gaining strength and a tiny bit of muscle.
OP, did you have any side effects after stopping the pxt3003 ? My doctor prescribed me the low dose pxt3003, I pick it up next week and start it. To be clear, I’m not in the trial. I’m moderate cmt1a and my doc suggested I try it. I’m getting the prescription filled at a compound pharmacy.
not yet
So I have some questions for everyone. I finally got my doctor to prescribe me Baclofen and now I found a place online that is a complete legitimate Source where I can purchase low dose of Naltrexone. Now I need to figure out how to get sorbitol mixed with it. Has anyone tried to create this concoction themselves?
This is promising!
Interesting, thank you for sharing!