Methyl cobalamin no longer works - Pernicious Anaemi...

Pernicious Anaemia Society

33,133 members24,414 posts

Methyl cobalamin no longer works

paspouse profile image
7 Replies

If you have been injecting with methyl and for years with success and your symptoms have started coming back it may be due to the freeze requirements recently initiated by the FDA. While they post that freezing does not harm the medication it has caused my wife's symptoms to return after using one batch of frozen methyl. For 15 years we were told not to freeze the medication, and it worked very well. Please FDA make exceptions for people like my wife! If anyone knows where to get unfrozen methyl please let me know! Thank YOU

Written by
paspouse profile image
paspouse
To view profiles and participate in discussions please or .
Read more about...
7 Replies
Whatnow1 profile image
Whatnow1

Hi Palouse I get powdered Methylcobalamin that I mix with 10 mls of sterile normal saline. .This makes at least 20 x0.5ml injections that I give subcutaneous into the abdomen.

I’ve been using this going on for about 6 yrs.You have to have scrupulous technique in drawing up and storage, this is why many on this forum do not use anything but single use ampoules.

This I understand, but my background was RN for 50 yrs.

Oxford Bioscience has powdered Methylcobalamin.

Nackapan profile image
Nackapan

I would use single use sterile b12 ampoules every time. I've not got an extra small fridge for medications only that you'd havd at the surgery .

Have you ever tried hydroxcobalamin or cyanocobalamin.?

There

is science behind it once described on here there is little difference as the body converts it.

The preservatives can differ slightly.

Horrid if not working.

My mums b12 froze in her fridge as it got pushed to the back .

That was thrown away.

It should been high up in her fridge door.

A habit from a hot summer and her house is very warm.

paspouse profile image
paspouse in reply toNackapan

She tried cyano and it does not work to relieve her nerve damage and pain. Compounded Methyl in individual syringes without preservatives is the only medication that works for her.

fx9898 profile image
fx9898 in reply topaspouse

Can you order Methyl from another pharmacy? Mine arrived refrigerated but not frozen.

mountmuir27 profile image
mountmuir27 in reply topaspouse

If her issue is methylation, which mine is (MTHFR 677TT per labs), give cyano a try and add a methyl donor such as trimethylglycine (TMG), SAM-e, B6, or folate. I use cyano since I reside in the USA and cannot get another form via insurance at least not in CA. Sone other considerations re: nerve pain. Be sure something else isn't causing this returning symptom because there are many other medical reasons beyond B12. Here are 2 examples: 1. She could be in need of thiamin, another B vitamin. Easy fix = give it a try and see how she responds. 2. Make sure she isn't becoming or is glucose intolerant or pre-diabetic or even overtly diabetic which in and of itself will cause nerve pain/issues.

wedgewood profile image
wedgewood

You can obtain Arnika B12 Methylcobalamin in Ampoules by emailing

manufaktur@arnika-apo.de . They will inform you of price etc and how to make payment . This is a small manufacturing pharmacy in Munich , Germany .

———————————————————————————————————————————————

You can find out about the powdered Methylcobalamin at perniciousanemia.org

This USA company gets its powdered Methylcobalamin from oxfordbiosciences.com

and sells it at 3x the price that you pay Oxford Biosciences .if you buy direct . ( but you need to email Oxford Biosciences to order because there is obviously an agreement . )

But there is a very good explanation on the USA site on how to use it etc .

Bernaldi profile image
Bernaldi

Wow. I had a local methyl injection about two weeks ago and definitely the methyl part was working. It was my first B12 so I don't know what the rest of it was.

I suggest you get hydroxo, which is harder to find but it's what I'm using.

Not what you're looking for?

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.