Min102 trial

[florida59]

Hi I have been taking part in the min102 trial for nearly 3 years , I gave it up last week as I felt I was not getting any benefit from it and my legs felt heavy and the legs were swelling. The clinic in Paris were very nice and helpful. I’m still mobile with the help of a cane hopefully there will be another trial

All the best from Ireland

[nikolahn]

The same experience. I give it up. 60 years old.

[Tim76]

I was in the placebo for the first 2 years but will have been on the actual drug for 2 years this September. I do not notice a difference either but will continue on because of the reported benefits of reducing the risk of getting C-ALD and the improvements in certain blood bio markers (that I don’t understand) . I do not have any side effects of Edema or swelling though.

[SongStream in reply to Tim76]

Same here. I am fortunate not to have much edema nor weight gain.

[SongStream]

I'm sorry to hear that but I understand it if you don't benefit. I've been enrolled since 2018, and I am waiting until November from the ALD Connect virtual conference on the Min-102 study on cerebral lesions.

[quilling]

Thank you all for participating and helping the cause. Even stopping early they were sure to have aquired important information

[wilburlois15]

I've kept going. It looks from the preliminary information that it might help prevent brain lesions but doesn't do much for peripheral symptoms. That's certainly been my experience. I have an extra 10kg of water from the oedema and while it isn't a problem, it's an important part of my weight (I weigh 85kg now) and I wonder if life would be easier without it. Looks like there will be other trials though ...

[KennyInPA]

It's definitely a person decision and do what you feel is best for you. My opinion is that I haven't had any adverse side effects and if it can help prevent CALD, I want to continue taking it for that reason. I'm participating in the Externally-Led Patient-Focused Drug Development meeting that ALD Connect is hosting to the FDA next month. At the moment we have NOTHING. I'll take anything at this point and I hope they get my message!