Reference for Methylcobalamin?

[Holnee]

I am seeing the neurologist next week and hoping to persuade him to let me try methylcobalamin rather than cyanocobalamin for a while. I am in the US, and it seems this may be a bit complicated, as I cannot order methylcobalamin injections from my usual pharmacy and will have to order them from a special compounding pharmacy, which may require some extra effort on the part of my doctors and she convincing of my insurance to cover the methyl. So, I am trying to be well-prepared for why the switch is important and why their extra efforts and insurance payment are justified. I wondered if anyone knows of a convincing reference for why methyl is preferable to cyano for some patients, particularly those with neurological symptoms that are not improving on cyano. Thank you in advance!

[Gambit62 Administrator]

I'm afraid it is going to be rather difficult to find any conclusive evidence and the jury is actually out on whether methyl is better than hydroxo and cyano. In fact it is is tending to move back towards hydroxo and cyano.

This is a link to a recent review of literature/studies on the subject

ncbi.nlm.nih.gov/pmc/articl...

However, this doesn't detract from all the annecdotal evidence that people respond very differently to different forms of B12 and for some report that methyl works best for them but others report that it doesn't actually do anything for them. I personally find that it works well for me with some symptoms but does nothing at all for other symptoms.

[Galixie]

I wish you luck. My insurance would not cover methyl because it came from a compounding pharmacy that they didn't have a relationship with AND none of the compounding pharmacies that *were* in their network would make methylcobalamin. So had to pay out of pocket for mine. I recently switched back to cyano.

You may want to ask your insurance provider which compounding pharmacies they are willing to work with and then call those pharmacies to see if they can and will produce methyl. You might be in luck if one of the covered compounding pharmacies makes it. Otherwise, I suspect you'll be up the same creek I was.

[Holnee in reply to Galixie]

Galixie, are you in the US? And would you mind telling me how much the methyl costs? I couldn't get an answer to that from either my insurance or the compounding pharmacy. The cyano is only $12/dose, so if I had to pay for that myself, it wouldn't be terrible.

[Galixie in reply to Holnee]

Yep I'm in the US. I was paying $60 for a 10ml vial of methyl, so that's about $6/dose. If you're paying $12/dose now, that's a good deal. It can be twice that price though. It really seems to vary by pharmacy.

Usually methyl is more expensive than cyano because increased regulations (put into effect after the 2012 New England Compounding Pharmacy scandal where hundreds of people were exposed to fungal meningitis) require additional outside testing of every product batch. So, of course, the compounding pharmacies pass that cost along to the consumer.

The other bit of regulation that might affect your ability to get methyl by prescription is that the FDA is cracking down more so now on strict adherence to dispensing only one month of prescribed injectables at a time (in apparent knee-jerk response to the opioid crises). So, if you inject 1ml weekly, the pharmacy can only give you 4ml each month. That means you would not be getting a 10ml multi-use vial. They would have to give you 1ml vials. I would assume any compounding pharmacy would be able to do exactly that, but I've never actually seen any 1ml vials from a compounding pharmacy, so I don't know for sure how they handle that problem.

[Holnee in reply to Galixie]

That is all very useful information. Thank you very much! I'll have to see how things sort out. I'm starting to wonder if it's worth the effort.