Dimethyl fumarate

[Yevgenii]

Have you heard about DMF or maybe prescribed with it? Please share you experience about it.

I wonder why it's 2023 and DMF is not specified in ALD/AMN treatments lists.

This article about DMF was released on 2020 :

adrenoleukodystrophynews.co...

[monkeybus]

DMF was on the old vlcfa.com list of possible treatments, along with Low Dose Naltrexone, 4-Aminopyridine, Sobetirome, and others I can't remember.

I worked my way through most of them, never tried DMF. Cannot recall why.

The Odone family certainly did raise awareness for ALD. Their only notable success was Lorenzo's Oil. The other possible treatments they listed above were basically copy/pasted MS treatments.

Thing about ALD is it generally progresses pretty quickly compared to AMN. It's generally easy to assess medicines when a vegetative state/death is just around the corner.

I just searched, but I cannot find any clinical trials regarding DMF for ALD. Even if it did work in mice sadly means little. High dose antioxidants reverse the symptoms of AMN in mice

[Yevgenii in reply to monkeybus]

Well, about antioxidants. I've seen a lot of reviews about that Alpha lipoic acid is not helping at all. But I had a good experience with it. At the beginning of my symptoms doctor prescribed me intravenous injections of ALA and all my symptoms disappeared. Then they came back. I tried the same prescription again in a year, I felt slightly better, but faced side effects as freequent urination. I still believe that it may help to slightly improve our condition or slow down the progression of disease

[Yevgenii in reply to Yevgenii]

I think we just need more time for improvement comparing to mice, since all processes in their organisms go much faster

[monkeybus]

Tried to talk to my neurologist about DMF today. He was having none of it. Just what I expected. Just like every other medicine I have got from him, I'll have to work on it some more.