Upregulating ABCD2/3: I have posted about this... - AMN EASIER

AMN EASIER

1,312 members1,165 posts

Upregulating ABCD2/3

monkeybus profile image
4 Replies

I have posted about this kind of stuff before. There are a few drugs (and supplememnts) that have been shown to upregulate ABCD2/3 and, indeed, to lower VLCFA levels.

Of course, lowering in the right places is the holy grail.

I mentioned Valproic Acid to my neurologist a few years back. He prescribed it without thinking too hard.

400 mg per day.

I took it, didn't get better, gave up.

I started again earlier this year, same dose, then I started to Google the scientific studies.

academic.oup.com/hmg/articl...

This is a long report, dealing primarily with mice, but it does mention a limited human trial.

"Five patients with X-ALD were enrolled after assessing normal liver transaminase activities. Four of the patients were affected with demyelinating cerebral adrenoleukodystrophy at ages between 7 and 18 years old. The fifth patient was affected with pure AMN and Addison's disease. Laboratory testing, including a basic chemistry profile, complete blood count with platelets, transaminases, carnitine profile, amylase, lipase and trough VPA levels, was performed at baseline and every 4 weeks following initiation. Dosing of VPA (Depakine), calculated at 40 mg/kg/day, was typical of that used in epilepsy patients (15–50 mg/kg/day). Patients reported no side effects related to VPA administration and compliance with the treatment was checked by monitoring the serum concentrations of VPA"

Here is the result:

"A 6-month pilot trial of VPA in X-ALD patients resulted in reversion of the oxidative damage of proteins in peripheral blood mononuclear cells. Thus, we propose VPA as a promising novel therapeutic approach that warrants further clinical investigation in X-ALD."

I'll buy that

40mg/kg/day.

At my 60kg, that equates to 2400mg per day.

My neurologist wouldn't go that high, but he upped my dose to 1200mg. So, I am half-way there.

Written by
monkeybus profile image
monkeybus
To view profiles and participate in discussions please or .
Read more about...
4 Replies
quilling profile image
quilling

Thanks for sharing. I often wonder about MS drugs and if they have been studied for AMN.

wilburlois15 profile image
wilburlois15

Interesting. It seems to indicate that the effects are somewhat complimentary to the effects of Lorenzo's oil. However, this was 2010... any idea why this hasn't been pursued further?

monkeybus profile image
monkeybus in reply to wilburlois15

Seems nothing gets persued further with our delightful disease. Likely not a big money spinner like MS drugs are.

I am giving it a shot. Has to be worth a try.

deengo profile image
deengo in reply to monkeybus

Good luck. I hope you get some good results.

You may also like...

MIN-102 update: summer 2022

particularly mind continuing with the trial because it's only one day per year and I'd have to go...

Symptoms? Onset of AMN?

dad died 12 years ago of ALD (2 brothers of him also died of (undiagnosed) ALD in their......

Upcoming Doctor Visit

I have an MD appointment in a few days and was wondering what medications may be helping others for...

Urinary Urgency: life becoming intolerable

I have a belated diagnosis of ALD [really AMN] based on raised VLCFA blood levels. I have also had...

MIN-102 trial 72-week update

at NHNN for another day of the usual tests and trials. Very little new to report. Ana has gone back...