B-12 Study

[Lynk]

Bob, where do you get your 40 mg of Methylcobalamin? What brand? My b-12 was very low normal (almost at the lowest number inside of normal) in a Dec 2014 blood test but nobody said anything about increasing it. When I saw dr. Pulley in August he said it should be twice as high and suggested getting the B12 1000mcg at a CVS or somewhere like that, which we did, but all that is available there is cyano. Then I researched it some more and found about the methyl. Pulley didn't mention the different types.

I approached my local neurologist with the abstracts, etc. nobody at his practice has heard of this. They seem interested and are researching it. They are not opposed to prescribing this but they simply have no information about it or how to get it. There is also other research on Methylcobalamin helping with painful neuropathy, so it seems like something they should tune in to, not just for ALS patients.

In the meantime I may do the cyano injections which my doctor is used to prescribing for low B12 and may order the methyl sublingual. I guess we can trust that what we get online is actually what they say it is?

 

[BlueandGold]

Just about any compounding pharmacy can get you the injectable methyl. Most docs don't realize this but the pharmacists do.

Vince

 

[Bob R]

I get it online from Vitacost, their own brand. 60 tabs @ $ 12.99 = about $ 50 per month. They call it "Quickdots". The worst thing about it is the red coloring dye. If you have excess saliva and drooling issues, wear a bib.

 

[Lynk]

I heard from my local neuro guy yesterday that he won't prescribe injections of methylcobalamin because they aren't approved by the FDA. He will prescribe injections of 1000mcg of cyanocobalamin.

I guess the issue is getting insurance to pay and how to get needles because it is possible to get the MeB12 without a prescription. In the short term while I figure this out I think I will go with what BobR is doing.

 

[Lynk]

Bob, I am unable to find the 40mg vitacost online. I looked on the Vitacost direct website, but the highest dose I see is 5 mg. (or 5000mcg) can you give me more specifics about your source for the sublingual type? Thanks very much.
Lyn

 

[Lynk]

Okay! I figured it out..duh! You take 8 quick dots at 5 mg each.

 

[rogeriopaguilar]

In the article they dont say if you should take 50mg in pne dose per week or divided in small doses daily. Does anybody know which one is the correct form?

 

[Maboss]

Dear rogeriopaguilar,

I had a short email communication with Professor Kaji (one of the study's author) and he told me to inject 50mg of methylcobalamin IM twice a week.
My mother started two months ago and after one month of fatigue due to the first injections she tolds me that it gives her a boost. The ALS follows her progression but slowly. However nobody knows how it could have been without these injections.

 

[DrFab]

Hi in France, the methylcobalamin version is not avalaible for IM
Can i choose the others versions of B12 ?

 

[lgelb]

No, you would want to use methylcobalamin. From a quick scan, it is available in France in IM vials. Perhaps see a compounding pharmacy to order.

 

[DrFab]

No, you would want to use methylcobalamin. From a quick scan, it is available in France in IM vials. Perhaps see a compounding pharmacy to order.

Thanks for your help
Where have you seen that methylcobalamine is available in France in IM please ?

 

[bear1973]

I haven't posted here in a while although wanted to chime in on Methyl B12....
Everything Vince is saying is right....docs are not always up to speed on what is going on like we are on these forums....Winning the Fight is good too.
I just started taking MethylB injections at 25mg/day. It's too soon to notice any effect, although given alsuntangled gives Methyl B12 and "A" for mechanism of action I figure I would give it a try, regardless that one of the studies said that it's most beneficial if taken during the first 12 months of the disease (...although as alsuntangled also notes, that is quite unrealistic given that often a diagnosed of als is not usually given until at least 2 years after the onset of first symptoms).
I printed out the ALSworldwide.org report, showed it to my GP, and he had no problem writing the prescription and sending it to a compounding pharmacy. I got the syringes pre-filled with 1ml at 25mg at a slightly extra cost, although not much more. That said, it's not cheap: I'm in Canada, and it's about $200 per month. The pharmacist says some are covered by insurance, some are not. He encouraged me to send a note from my doc saying the potential benefit given the als diagnosed, which he did.
I called some pharmacies before I went about the injectable route, and they all said the vitamin b12 is exceptionally poor at being absorbed orally, saying that only about 2-5% is actually absorbed...maybe 5% if sublingual. Before I knew this, I had bought several bottles of methyl B sublingual at Costco for a great price - 225 1000mcg tabs for about $14. So...if you still want to take sublingual, if you have a Costco nearby they just might have them...
Anyways, will keep posted re: any potential benefits of the b12. I also started the Deanna protocol and have to say that it might very well be of benefit....since taking AAKG and AKG especially I have not noticed as much twitching. Fingers crossed it will help "preserve" what I still have left....
B

 

[lgelb]

Fab,
Believe I saw it in Sanofi's catalog just doing a general search. But again, compounding pharmacies who source their raw materials wholesale are often more economical if you are dealing outside the insurance system.

 

[Lynk]

Last January I had a whole array of blood work done to try to figure out what was wrong with me. My B-12 was almost below normal range, but just above it. (Normal is 211-946 pg/ml and mine was 225) My local neuro who ordered the tests didn't say anything about it...I guess because it was in normal range...but Dr. Pulley at Jax ALS clinic on August 18 noticed and said it should be at least to mid range and that I should take 1 mg per day of over the counter B-12. The only thing we found was the cyano and I started that at the end of August. Dr. Pulley did not mention the Japanese study.

Then I read about the methyl type here. In September I ordered sublingual methyl from Amazon...Jarrow Formulas 5 mg ...they are sort of like sweetart candy. Almost every day in Sept and Oct I dissolved 5 under my tongue for 25 mg per day. In late October I had another blood test done for the B-12 and it is now over 1000 pg/ml. My primary care Doctor got the report and they called to tell me to stop taking B-12 because it was so high!

Since the doctors don't know anything about this study (except the info I have sent my local neuro, which he found interesting, but that is all... Not approved by FDA, etc) what does anyone here think about continuing to take the 25 mg/day? My neuro guy (not Dr Pulley) knew I was taking this much and didn't seem worried about it. I see Dr. pulley on Nov 19 and will ask him what he knows/thinks about the study.

Any feedback appreciated. I am now a little over one year since my first noticeable symptom, which was a striking inability to pinch a clothespin with my dominant forefinger and thumb. Was diagnosed in July at Mayo Jacksonville and given a probable diagnosis at Jax Shands in August. My symptoms have gotten a bit worse but actually pretty stable..definite decline in May but not too much after that. Started riluzole in June.

Thanks,
Lyn

 

[rogeriopaguilar]

Dear rogeriopaguilar,

I had a short email communication with Professor Kaji (one of the study's author) and he told me to inject 50mg of methylcobalamin IM twice a week.
My mother started two months ago and after one month of fatigue due to the first injections she tolds me that it gives her a boost. The ALS follows her progression but slowly. However nobody knows how it could have been without these injections.

Thank you.

Rogério