I was diagnosed this month with pernicious anemia, with major neurological symptoms. Like many folks, I had difficulty finding someone to provide daily or every other day injections. In addition, I discovered that Medicare does NOT cover B12 injections, and the cost at my local pharmacy for each cyanocobalamin injection was over $8 cash, not including a syringe. I could not afford over $270/month for SI daily shots (jabs).
I feel very blessed that my functional medicine doctor is willing to prescribe daily or EOD injections AND is willing to adjust the dosage/timing based on symptoms. Unfortunately, she does not accept Medicare or any insurance, and each visit is $200! But, if you can afford it (I really can't but I absolutely need her right now), functional medicine doctors are a resource worth checking out. Some of them will work with you long distance, if you don't have a local one available.
We discussed our options for the type of B12 to inject. Cyanocobalamin is what is regularly used here in the U.S., and it is harder to find the hydroxo or methyl versions. But she uses a compounding pharmacy for specific injections (Wellness Pharmacy in Alabama). We chose to use hydroxocobalamin, as it's only needed every two days, which actually saves on cost over daily cyanocobalamin. Just be aware that many healthy insurance companies don't cover compounded medicines.
With this pharmacy, it's costing me about $295 for four months ($74/month), including 60 single use vials of hydroxocobalamin, syringes, and overnight chilled shipping (they don't use preservatives in their vials). It's still more than my budget can really handle, but I don't have much choice right now. I'm just thankful that I can get the treatment I need.
The compounding pharmacies may also be able to provide a list of doctors that work with them (Wellness does). Best wishes, everyone!
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Gardenswithwings
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Thanks so much for your post. Very interesting. I self inject hydroxo using the 30ml multi use vial. Periodically, I do run into issues sourcing it due to shortages.
Do you ever have this issue with being able to source it through your compounding pharmacy? What is the shelf life for each vial? Finally, how do you feel on the hydroxo?
Single use vials are appealing to me. I don’t know if it’s my imagination but I feel like I have the best response from that first injection drawn from a freshly opened vial. The inability to source the multi use vial also leaves me in a state of worry about when the bottom falls out again and I won’t be able to access it. My only option would be the cyano.
When I received my first B12 injection, I remember the nurse telling me that I was lucky that the injections were covered by my insurance and that the Medicare patients weren’t so lucky and had to learn to self-inject because insurance wouldn’t cover the cost for a nurse to administer the injections. This is absolutely insane that Medicare doesn’t cover this!
Thanks again for the info and I’m glad you found a treatment option that works for you.
I'm currently using daily cyanocobalamin injections while waiting for my hydroxocobalamin to arrive. I'm brand new, having just been diagnosed 2 weeks ago, so I haven't tried the hydroxo form yet. This compounding pharmacy only does single dose vials (which is all I've had experience with so far), because they don't use preservatives. In addition, the vials need to be refrigerated and have a shelf life of only 6 months. Might become an issue for me if I ever get healthy enough to go camping again, so I might need to keep some conventional preserved cyanocobalamin on hand for situation.
You could call this company up, and ask about potential sourcing issues. I get compounded thyroid capsules from a different pharmacy, and they had regular problems obtaining the T3 ingredient for a year or two, and I could only buy 50 days worth at a time.
Thanks for your reply. It would be great if you could post a follow up after switching to the hydroxo. I would love to know whether you noticed a difference in how you reacted, was the serum comfortable to inject?
I am lucky to have Rx coverage for compounding pharmacies so this is something that I’d be interested in looking into. I hate living on the edge—waiting for the bottom to drop out when I won’t be able to obtain the Actavis 30ml vial of hydroxo due to shortage/back order.
Some users on the forum also like the fact that the compounded version doesn’t contain parabens—something more important for those injecting very frequently. Thank you!
I'm sorry you are having to go through this. I don't understand why the medical establishment treats B12 deficiency like it's not a real medical issue. I am fortunate to have a doctor (here in the US) who understands that it is a potentially deadly condition. I also have good insurance (BlueCross/BlueShield) that covers a major portion of the cost of my B12 shots. My daughter also has pernicious anemia and her insurance is not good so I know what a problem it is.
On a more positive note, hopefully you won't need to keep up a regimen of every other day shots. Once you have healed maybe you won't need such frequent injections. I get a cyanocobalamin shot once every three weeks. Once a month just wasn't enough for me. My doctor has also given me a prescription for self injection. I keep the vials in a drawer just in case I need a top off and I don't feel like driving to his office.
I am hopeful for a full recovery, since my injections began just 5 weeks after the very first day that the neuropathy started. I only got diagnosed so quickly because my symptoms developed extremely fast and I refused to accept my local neurologist's delays, and went to the ER of a hospital with an excellent neurological department.
Once I was able to start daily B-12 injections, my baseline symptoms have been steadily improving every day. I am so thankful!
Hi all - I came across the US website below & their prices seemed reasonable. They seem to have a supportive philosophy. Might be helpful for some. b12vitaminstore.com/default...
To clarify - the company appears to be in Thailand but caters to US. I think the owner is American & tries to provide affordable injectables. You can read his story in the About Us tab. Just another option. Good luck all. 😊
Fellow American here- also diagnosed by an integrative medicine clinic after decades of misdiagnosis. My doctor there was willing to prescribe SI, but the clinic wouldn’t let her , citing it was against their ‘protocol’. I finally decided to order my own from Germany to SI. I always appreciate hearing everyone’s experiences.
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