B-12 (methylcobalamin) injection trial

[lgelb]

The paper, based on work in Japan, is here. I can pick holes in the methods and limitations all day (perhaps most obviously, red urine is a clue that you are on study drug, not placebo, and that combines with the FRS score, the primary outcome measure, as subject to self-report), but they did what they did, and the results in early ALS (e.g. no BiPAP nor need for one, but distinct progression) are positive. They built on other studies with similar results.

Note that the other form of B-12, which is cheaper, called cyanocobalamin, the kind that is in most multis, would not be expected to show the same effect. Also, there are a few conditions and meds that don't work with B-12, so always check interactions first.

Guided by previous work, the researchers tested a super-high dosage (50mg 2x/weekly) that you cannot get in pill or oral liquid form -- it's injections only. But if you want to take a flyer on some oral or sublingual supplementation, as some here have, absent contraindications, it should do no harm.

Best,
Laurie

 

[jeff9000]

My understanding is that this attenuates high homocysteine levels which are neurotoxic. Wouldn’t they test for high hcy before going this route?

 

[lgelb]

Those levels can jump around, and there is some evidence that homocysteine is not the full story. So some docs might, but others might not.

 

[PiratesWife]

We are hoping to start this treatment for my husband, right now we are doing high dose of vitamin B thiamine HCL and I’m wondering if we should discontinue the thiamine while doing the B12 injections.

 

[kellysal]

I have been on B-12 Methylcobalamin injections 50mg 2x weekly for 8 months

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[smarinkov]

kellysal, what is your experience with MB12? Where/how did you obtain it, and for which price?

 

[KimT]

I decided to go the oral route and take 10mg sublingually each day. My levels are very high. Mayo told me to stop and I cited the Japanese study. Their answer, "you're not Japanese." Of course I continued. It did bring my homocysteine levels down a lot and that was enough for me to continue.

My urine is never pink (even when I took the high dose IM route) and that may be an indication that my body is using all of it.

My doctor was getting it for me when I was using the injection. I had to store it in the refrigerator.

 

[kellysal]

My Dr Prescribed it. It’s cost 100.00 a month I have it filled at a compounding pharmacy . It comes in pre filled syringe’s. It’s hard to say with anything we take if it’s helping. My Dr said B12 and AMX

 

[lynnbr2]

This is now getting more scrutiny in the US, necessary for the needed FDA approval.
Still, a Phase III trial which only has 129 folks of a single race, will make it difficult on the FDA to act quickly.

Efficacy and Safety of Ultrahigh-Dose Methylcobalamin in Early-Stage Amyotrophic Lateral Sclerosis

 

[steve613]

Kellysal could you please provide contact information for the compounding pharmacy where you got the IM cobalamin injections. Thanks!