Minoryx Advance trial over

[wilburlois15]

Hi everyone,

I got a letter a few days ago from NHNN London saying they're terminating the MIN-102 trial. This was expected as the trial didn't show any meaningful improvement of AMN patients. The new leriglitazone ALD trial continues, but is unrelated.

It's been almost six years. Will be weird to see what I look like without water retention. And how much my weight normalises. Pretty sure I've put on a few pounds above and beyond the water retention.

Back to the TUDCA!

Hope all is well

Angus

[KennyInPA]

I haven't heard anything yet here in the US, but I've been kind of expecting them to soon pull the plug. I think they will be doubling down on the CALYX study, which I assume we may be able to transfer to and they will continue to pay for yearly MRI.

[StevenSims in reply to KennyInPA]

I’ve not heard anything from the Netherlands either? I’ll miss the pain relief if I stop?

[bluejadedwho]

YES to the TUDCA! I have combined 2g/day of TUDCA with the molecules from the "High Dose Antioxidant" study: NAC, Alpha Lipoic Acid and Vitamin E. In theory and shown in the studies, TUDCA could potentially stop progression, and the antioxidants, couls potentially heal damage already done. So my theory is, is to combine these two protocols, which then basically takes up the slack for the mutated gene, and then as mentioned could potentially heal damage that has already been done.

Personally, I would rather implement my idea of the combined protocol that has at least been studied a bit, then take any chemical pharmaceutical drug.

[tetris]

  wilburlois15 : Would you ever consider taking pioglitazone instead? Its known side effects are not great, but AFAIK they are not very different from the side effects of leriglitazone, anyway.

Since it's a diabetes medication, our endocrine doctors can prescribe it. For example, for 3 months now, I've been taking 15 mg/kg metformin a day (and B12, B9, and B6 supplements), in case its upregulation of ABCD2 does anything helpful. But I'm asking my endocrine doctor for pioglitazone now, too.

FWIW, metformin's effect of weight control maybe balances out pioglitazone's common side effect of weight gain.