MIN-102 results

[nikolahn]

6 minutes walk - no improvements

Brain inflammation - improvements

minoryx.com/media/minoryx_p...

[StevenSims]

Very good to hear! Thanks for sharing!

[KennyInPA]

While I never have noticed anything significant, if it helps slowing down CALD development, that's awesome! I still haven't been told if I was in the placebo group, but glad to know I'm getting the real drug now.

[SongStream in reply to KennyInPA]

I was one of the six who developed ACALD while on the placebo. Since April, I've been on the actual trial medication and we will hear more about the results end of year.

[Kranal]

Good news about improvement in brain inflammation - that's progress

[wilburlois15]

That's good news. Of course, this is an announcement by Minoryx so they will emphasise the positives, and we're some way from the initial hopes, but a halt to progression is good news.

[SongStream]

Also of note is that Min-102 is beneficial for those with beginning AMN symptoms but not for those with advanced symptoms. And while childhood cerebral ALD can lead to AMN, it is some help and therapy. I only wish I had this when first diagnosed with AMN with minor symptoms

[StevenSims in reply to SongStream]

How are you doing? Is a bmt planned?

All the best

Steve

[nikolahn in reply to StevenSims]

I am 58 years old. Bmt is not for me. I am taking MIN-102 from last august. No walking improvement, my main problem. Have not asked if I got placebo during the second phase. Still able to drive a car and going to by food once weekly. Started taking theophylline 100mg daily. Hope it will fix the periferal nerves in my legs.

[StevenSims in reply to nikolahn]

Hi, I was asking songstream, glad you are ok though! You are on the extended study now so you are 100% on the real drug! I was on it from the start! I’m currently taking 5.5ml all the best

[SongStream in reply to StevenSims]

I'm on 14.5! Maybe because of the cerebral involvement. I don't want to be premature with my result until the data is published.

[SongStream in reply to StevenSims]

Hi Steve. I was pretty much left alone with learning about the risks, procedures, etc. before even starting pre-work. After much exhausting research, I decided not to pursue BMT. Being 59 this year poses greater risks and I know General Mass has a cutoff of 60 years of age and the University of Minnesota at 55 years. My Lowes score was also 8 which is 1 less of a disqualifier. I was referred to University of Minnesota and I was not a likely candidate, however, my own support team would have rallied on my behalf. Today, I am feeling very well with no symptoms. My last MRI was in Jan and I have an appointment next week at Stanford to review. Something to think about gents: Another radiologist reviewed January's MRI and gave a Lowes score of 6! (Yeah!!) However, scoring techniques can vary among radiologists which is why an expert (Dr. Van Haren) will review because I was advised by Stanford that there does appear to be some progression but I will know more next week and keep you updated. Also of note, I've been taking a high antioxidant cocktail (supplements) since November and had posted them here. I'd thought my Lowes score of 6 was attributed to that! Oh, and I found out that I was on the placebo! (Waiting to hear from Stanford to see if I can climb back onboard Min-102.) Thanks for keeping me in your thoughts.

[fmorgan458 in reply to SongStream]

So now are you getting the real stuff?

[SongStream in reply to fmorgan458]

Won't know until my Stanford appointment next week but they did offer me to go back on. But I waited to see if the antioxidants will help. (I've been on them since mid-November and hopefully my next MRI will show the lesions arrested. And if so, that could be another treatment method. I'm all for science!

[StevenSims in reply to SongStream]

Glad to hear you are doing ok! Hopefully it has stabilised? My lesion has been there for a few years now but no gadolinium enhancement! I had another scan last week so fingers crossed! Usually when it gets active it deteriorates rapidly so I’m hoping you are lucky

All the best

[fmorgan458]

Thanks for posting this. Hope you continue to improve!