On to the next phase of the MIN-102 trial

[wilburlois15]

Hi all,

After 5 month coronavirus delay (not me, the hospital), I had the final meeting of the MIN-102 trial in early September. All the usual stuff happened, although they had some almost comic problems with some of the equipment (batteries ran out on the stop watch but Minoryx won't allow them to use the stop clock on a smart phone instead so the nurse had to run out to buy batteries). Apparently NHNN have these problems because they are a hospital rather than a dedicated clinic. Due to a congested hospital schedule I had to go back the next day for the MRI scan and I have the echocardiogram this week.

So I am now onto the next phase, which is almost identical to the first phase except everyone is on the drug. As a result we all go back to 10ml, and they do a 4-week session (mine is this week) and a 12-week session to re-establish the dosage. After that, meetings and tests are annual, rather than semi-annual and are, I think, over the next 3 years.

How is it going? There's not a lot new to report. I am pretty sure I am on the drug because I've gained 10kg in water (from 73kg to 83kg), but other than that there are no outward signs. I urinate more, especially at night times, but I find it easy to get back to sleep so that's not an issue. I spoke to the doctor about using a diuretic to improve the situation but she indicated that it wouldn't make a great deal of difference - I'd still have some water retention and I'd still urinate a lot.

Memories are tricky things, but I'd say there has been very little change in my symptoms in the 2 years. This is borne out by my performance in the 6 minute walking trial. Unchanged symptoms appears to be the baseline of what they are looking for, and I'm not unhappy with it. In terms of lifestyle I am using my sticks more to walk around but that's largely because I'm fed up of falling over and alarming other people, rather than any change in my ability.

I don't expect anything to change at this week's meeting, although I'd be surprised if they don't increase my dosage back to 12ml at some point.

Hope you're all managing fine!

Angus

[Coslet]

Good luck! Keep your head up.

[Kranal]

Great to hear about all this, because MIN102 has been on all our minds, and your feedback is really interesting to us. Good luck progressing to the next stage.

[stevens74]

hello angus,

I too have finished phase 2 and am now in phase 3. I too have had water retention problems, but I have also had a considerable increase in cholesterol and a decrease in red blood cells and folate. My intention, however, since the drug will be marketed shortly, to stop taking the drug for a year and see if the high values normalize. I haven't had any changes in walking either, but I don't know how much this is due to the drug or if it's my normal degeneration of the disease.

[wilburlois15 in reply to stevens74]

Are the cholesterol and other symptoms related to the water retention or something else? I have to say that considering I am carrying around 15% extra weight, I am surprised that I am not having other problems...

With the trial, I suppose 2 years probably isn't long enough to determine how much walking, or anything else for that matter, has deteriorated or remained the same. Would be interesting to see the results so far.

[jayxie]

Maybe no change is the best outcome.

My expectation for Min-102 is to stop the progress and let us gradually improve the motor function through exercise and body self-repair. Look forward to the year-end release. It is also unclear how the drugs will be priced, whether sky-high or affordable.

[Simba83]

Hi everyone I just joined this group chat and very curious to know wether min-102 will also be a medicine possibly available for women with ALD. My wife 36 is just starting to show symptoms very similar to AMN and I've been trying to feel hopeful about MIN 102 for women as well. Would really appreciate some comments on this.

[jayxie in reply to Simba83]

Have done gene to detect, AMN female come on, can be in commonly 50-60 years old or so, the symptom is dyskinesia.