B12

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JAM

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CALS
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Racine
Hi all,
I know this may seem like I’m going down a rabbit hole, but here goes… my PAL’s has pernicious anemia. Was dx 7 years ago. He received weekly shots up until about 3-4 years ago (I’d have to double check that) when Dr said high dose methyl chewables daily were effective to maintain his level. He takes 1000 mcg chewable daily that he orders on line. He has had annual b12 levels checked in blood where level shows within norm so GP thinks all is fine. However (Altho I probably shouldn’t have), I’ve read a couple studies where the blood test can show normal level even if depleted esp in someone whose body is unable to absorb b12 and is taking high dose oral daily (My PAL’s).

I’m not looking for B12 answers, here is my problem. we have asked our GP to go back to shots and he refuses without blood work, which as I said could be inaccurate (maybe not but I’d like to try just in case his is wrong) We’d really just like to get the prescription and do the shots at home (sister is nurse so can administer). Any help in how to get a prescription. It’s for B12, not some hard narcotic and he has a documented condition for it. It may make no difference, but we would like the chance to try.

Ty for listening to my babble.
 
Hi Jam.. here in Ontario Canada, the pharmacist give us the liquid B12 for injections without a prescription not sure if you can do that in the USA.
 
Methylcobalamin injections are approved in Japan for ALS. have you asked your neurologist to prescribe? My neurologist does no labs needed
 
We only asked his PCP, who is insisting on test first (I’m also concerned that for the past 3 years of testing for B12 level he never had my pAL’s stop with the sublinguals to prepare for the test - would that not give a false result?). I will have him check with our neuro.
I’m not sure without accurate levels how much to ask for ? I’d like to try weekly shots.
 
The als dose is 50 mg im twice a week or 25 mg three times a week. My compounding pharmacy had the max volume injectable in one shot in 25 mg
 
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Any decent PCP would take the current supplement levels into account. But as Nikki stated the injections should be available through a compounding pharmacy and a neuro should be willing to write them irrespective of his current levels -- in fact, his history should only increase that willingness.

I'm sure your husband has had a gastroenterology workup at diagnosis given the association of pernicious anemia with stomach cancer, but I would consult with a gastroenterologist to see if a repeat is suggested before placing a feeding tube.

The product approved in Japan for ALS is a proprietary form of mecocobalamin (NOT the same as methylcobalamin) that is packaged in special vials to protect it from light. This form is not yet available in the US, so methylcobalamin is the closest thing for now. For those interested in supplementing B12 orally, methylcobalamin aka Methyl B12 is available in chewable lozenges up to 5000mcg.
 
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Ty Laurie. I will ask have him ask his Neuro about the IM form. It seems like it shouldn’t be this hard with his PCP since he is the one who diagnosed him years ago, but even after indicating he will need at some point anyway (due to chewing/swallowing issues) they want him to come in to go over. 🤦‍♀️
 
Hi Laurie,
After a lot of effort our Neuro did place an order for B12 - since I am not a octor I had no idea about different forms of B12 and amounts. He only put order in for 1000mcg once per month of Cynoclobamin. Nikki and other posters have said 25mgs (much higher amount) on a much more frequent basis (more than monthly) shoukd be available for ALS patients- and those aren’t even PA ALS. I’m at a point where it feels like we have to fight with doctors for help :(. Please if you or Nikki have any suggestions. Ty.
 
Show either the neuro or pcp this Efficacy and Safety of Ultrahigh-Dose Methylcobalamin in Early-Stage Amyotrophic Lateral Sclerosis: A Randomized Clinical Trial - PubMed. And tell them it os now approved in Japan but you know US ALS specialists are also prescribed off label

Mgh prescribed 25 mg three times a week instead of fifty twice a week. I don’t know why but it might have been because 25 mg the way it is compounded here is the most volume you can give in one injection

I would also find a compounding pharmacy that will do it first. Or do you have one now?
 
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