Hydroxo-B12 in the US?: Is it possible... - Pernicious Anaemi...

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Hydroxo-B12 in the US?

canyongirl profile image
13 Replies

Is it possible to source shelf-stable hydroxocobalamin in the United States?

I self-inject EOD with methyl-B12, but it needs to be refrigerated and is a hassle for any serious travel. My compounding pharmacy can also do hydroxo, but again, requires refrigeration. I'm looking for options but seems like it's all cyano-B12, which I have never tried.

Open to everyone's tips and experience.

Thanks in advance!

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canyongirl
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wedgewood profile image
wedgewood

I’m in UK , and source my Hydroxocobalamin from Germany . I have enquired at the manufacturers about storage and they say that there is no need for refrigeration , just that they it should be kept dark . All cobalamins are very light -sensative. but I must say that i do refrigerate my Hydroxocobalamin in a heat-wave ( a rarity here !)

I know one German online pharmacy that does supply USA

apohealth.de if you are interested. Available in English, union jack , bottom left on my device. In Germany , Hydroxocobalamin is called B12 depot .

ReallyWondering profile image
ReallyWondering

I’m in the US and self inject cyano weekly. It’s working fine, so far. It’s been 6 months. My insurance pays for it.

canyongirl profile image
canyongirl in reply toReallyWondering

Thanks! I have not tried cyano due to MTHFR issues, but I may have to lean on it here and there for travel. We'll see!

mcg-woo profile image
mcg-woo

Hello,

I have been sourcing Actavis Teva hydroxo in the US at CVS and more recently at Walgreens for about 7 years. It is a 30 ml vial that must be refrigerated once opened and tossed after 28 days. I refrigerate unopened vials and wrap in foil to preserve potency though this is not required.

However, there have been multiple shortages over the years. I have been able to weather the storm during those shortages, but this most recent one has gone on so long that I was forced to order hydroxo from Germany.

Cyano is readily available in the US. I believe it’s because it offers a more comfortable injection experience and can be administered SC. It is also sold in individual vials. Actavis hydroxo must be injected IM in the US and some people don’t have an appetite for IM self injection. Plus it’s only available in a multi use clinic package.

Another possibility is that Medicare does not pay or used to not pay for patients to receive injections in a clinic—it required or requires patients to learn to self inject. The nurse who administered my very first cyano injection in 2016 told me that I was fortunate that my private health insurance provided coverage for me to receive injections at my doctor’s office— that Medicare patients had to learn to self inject since it didn’t offer that coverage for b12 infections.

Anyway, if you are able to source the only hydroxo in the US, you are still going to have to refrigerate the multiuse vial once opened. No way around that. I could only find methyl at a compounding pharmacy and I was reluctant to switch types of b12 as I do well on hydroxo.

Btw, just tried to order Actavis hydroxo a couple of weeks ago and no luck. Updates indicated it would be available late March. Anyone else have any luck?

I started on the German Pascoe 1500mcg, but went back to my expired Actavis vial because I felt a little different. Not sure if it’s because I was injecting 2,000 mcg of Actavis to make up for possible loss of potency and went down to 1500 mcg of the Pascoe? However, I am down to my last Actavis vial, so I will have no choice but to inject the Pascoe. A normal injection schedule for me on unexpired Actavis is 1,000 mcg once weekly. I wrap the Pascoe in foil and refrigerate to try and retain as much potency as possible. The expiration date on the ampoules is 2026–which I think is great!

Thoughts, anyone? Appreciate some advice on feeling a little different on the Pascoe. Flucuating hormones could be a possible culprit or even just being a little paranoid about switching?

PaintLadie profile image
PaintLadie in reply tomcg-woo

I have not tried pascoe but have tried hevert and panpharma and have done great on both of them. I actually think they have worked for me better then the Activis Hydroxo here in the US. Although many other factors could be attributed to that as well.

canyongirl profile image
canyongirl in reply tomcg-woo

Thanks for your feedback! It's ridiculous that you can find hydroxo OTC in some countries but it's such a precious commodity in the US. I will look into the options you mentioned... appreciated!

wedgewood profile image
wedgewood in reply tomcg-woo

You can inject Hydroxocobalamin by the subcutaneous method . I have done it and it is successful. It is stated on the German packets of single use ampoules .

mcg-woo profile image
mcg-woo in reply towedgewood

Thanks for the info. I’m used to injecting IM and so I have an RX for those syringes. This is my first time using Pascoe so I’m trying to change as little as possible. I already feel panicky that the Pascoe won’t work but I’m trying to keep an open mind. I’ve used Actavis hydroxo exclusively for close to 8 years. Lots of folks here swear by Pascoe so that’s giving me comfort. Thank you!

wedgewood profile image
wedgewood in reply tomcg-woo

Of course you are nervous trying a new brand , but I can assure you that it is a first rate injection . Many of us in the U.K. have turned to Pascoe Hydroxocobalamin ampoules when our go-to Panpharma brand was out of stock for ages

I have used it myself . Absolutely great . Best wishes .

PaintLadie profile image
PaintLadie

No luck, Hydroxo in the USA is still unavailable at the moment. I saw a news story that said the current Ozempic craze could be be to blame. I guess the makers of Ozempic are buying up all the sterile injectable stuffs; creating shortages in many other sterile injectable prescriptions, which I just assume includes B12. Last time I remember a shortage of B12 where I am was when Dr. Oz was blasting B12 for weight loss on his stupid show. I couldn't get my script filled then either.

mcg-woo profile image
mcg-woo in reply toPaintLadie

Thanks for the update. This situation is so frustrating!

canyongirl profile image
canyongirl in reply toPaintLadie

Wild. Thanks for the reply!

JesusMercy60 profile image
JesusMercy60

Hello canyongirl,

I have been on eod for 3 full months and just starting 4th month. on my days of no inj with cyano cobalamin I am getting so afraid of having a crash and I'm in bed most of the day after going on an errand or being with the grandkids I get just wiped out and back in bed most of the day. I'm still new but I've been praying on if I should go to 1/2 ml on the days of no inj. for a good while then see how that goes. when I get too low I get anxiety and it's hard to even spend any energy at all. and thats always on the day of no shot. today is the day I'm going to start and I'll see how I do. I did at one time try to cut back and had a long recovery with feet nerves hurting again it was way to soon. so I learned to just wait for cutting back at all.. if anything I feel I need more and after reading on posts from others if they need more they just go right ahead. It's our bodies food I'm learning with PA. maybe waaayyy later I can start to cut back but for sure for now I need more if I plan on getting out of bed more often. I still lay down and rest everyday throughout the day and it's still early in treatment.

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