Buntanetap

[mattil]

First phase 3 Buntanetap trials are coming to an end soon. What do the participants think - does the drug have any potential in the treatment of the disease?

[PDTom]

I hope it!

[MBAnderson]

It might have relieved me of constipation Aug 1, (after 3 mos) and I don't want to jinx it, but I might feel a little better. Lighter.

I'm not certain of either. tho.

[nednedned]

no one can know if they received placebo or not

[Pixelpixie]

guessing either I have placebo or didn’t reduce symptoms

[1953bullard]

will we ever even know if we received placebo or not? Whatever I received did nothing for me

[jimcaster]

Like everyone else, I don't know whether I received the placebo or the actual drug, but I didn't noice any obvious benefit.

[Hilo64]

I honestly don’t see any noticeable improvement in my condition.

[MBAnderson]

It is possible that it is slowing progression and we'd never know.

Also, we may be looking for more dramatic improvement to consider it having made any improvement.

A PT therapist at the Mpls VA did a bunch of timed exercise test on me last week and my time to completion improved, yet I would have never guessed that.

[Ctime]

I have been finished with my Buntanetap trial for almost 2 months. I feel that my disease progressed more slowly while in the trial. I did not experience dramatic symptomatic improvement.

[emstadler71]

I may be in the minority but I did see a benefit. However, I also worked hard to lose 45 pounds while on the trial. I definitely exercised more. I’d like to go back on (though who knows - I may have been on the placebo 😜).

I had virtually No off time during the trial and I had significant improvement in my walking speed per my PT. Now that I’ve been off the drug for a month, I feel my meds wearing off more quickly. I would go in to my trial visits 12 hours off of my levodopa and have zero Tremor. Now, the tremor starts after about 5 hours and even wakes me up at night.

I’ll be curious to see if I was on the drug 🤷‍♀️

[mattil]

Thank you for your answers. Lets hope that all goes well!

[DJJD3]

I didn't notice any difference. I don't know what the collected data showed.