B12 Methylcobalamin Injections 25 mg daily

[CarolSue]

Wondering if anyone has been taking Methylcobalamin injections and what is there experience with it, cost, effectiveness? I have a prescription from neuro but have not had it filled yet. One "sterile compounding" pharmacy told me $1500 a month, another told me $300 a month and still waiting on another quote. Seems the pharmacies are slow to respond. I know they freak out at the ultra high dose.

Also was told by my neuro to take Vitamin C 3x daily, Vitamin E and Beta Caratene. Anyone else taking these supplements/vitamins?

What do you all take beside Rilutek? Anything that you just swear by? I have read about so many different things to take my head is spinning....Just trying to sort it all out.

Thank you,
CarolSue

 

[Nikki J]

Hi
What to take is much debated and probably what is right for your ALS is different than what is right for mine. It is commonly said by many ALS is not one disease but many.

You need to evaluate everything in light of your own health and check interactions etc. that said
I take riluzole and methylcobalamin. Yes shop around pharmacies. My neuro actually tried 3. The one they picked 25mg is about 15 dollars a dose. In my state it must be dispensed in prefilled syringes if from a compounding pharmacy.

I also take E. My neuro was quite insistent. Also d3 in a higher dose than what I took before to maintain a just normal level.
I started TUDCa last year based both on a small study showing a small benefit in ALS and a lab study that postulated it might help the biochemistry of my specific genetic defect. I also take gastrodin. It is a Western version of a Chinese herb that is used in neurological disorders and it chemical action looked like it might have some benefit in one of the proposed biochemical pathways of ALS.
Turmeric as an anti inflammatory.
I used to take acetyl lcarnitine and l serine. I might again it just got to be too much. Also liposomal glutathione

You can go crazy taking things- and go bankrupt. Everything I have taken has been at least approved by my neuro. Some she actively recommended
The only other thing I take is magnesium for cramps and sleep

 

[GregK]

CarolSue, if you search on those supplements you'll find a fair bit of info.

 

[chally]

Well carol, you asked so here is what I take. Vitamin C 1000mg, turmeric 1000mg, muti- vit, baby aspirin, lots of fresh clean spring h2o, good organic foods ,meats& fruit,veg, good family&friends, good books,movies,music,art, just starting to paint some, outdoor PWC adventures, 12 step fellowship, rest. As you can see not much on the pharmacy list. I did try lunasin&riluzole neither set right for me so I stop them. I am taken this all one day at a time trying to have a positive attitude as much as I can. I to get over whelmed with all that is out there and personally think most of it is "snake oil" ( my opinion) . You'll find your own path on ,this keep posting the more ya ask the more ya learn. Good luck. Love ya chally

 

[CarolSue]

Nikki, thanks for the information. I looked up each and every one of your supplements and all seemed to have great qualities. I will see how many I can incorporate into my daily plan.

GregK, I did exactly that. Lots of info there and I plan on trying several of them.

Chally, love your attitude. Some days I feel the same and other days not so much. This is all still fairly new to me as I was just diagnosed Jan. 2016. I went for a second opinion at KU Medical Center last month...took a while to get in. A neuro there confirmed my diagnosis from looking at my one and only EMG from another Neuro. She referred me to their KU Med Center ALS certified clinic. I can't get in there until May 18th. Very frustrating.

Anyone else have any supplement/drug info they would like to share please do. I'm all ears and of course will check it out with neuro before starting.

Thank you all so much for your replies!
CarolSue

 

[azgirl]

Early on I tried several different supplements, and found it all quite confusing just as you are. I've settled on just the Tumeric, D3 and rilutek. What I think has helped me the most is daily like to exercise on a exercise bike or swim, early BiPAP intervention which my doctor believes can add a year or more to life, keeping my mind active with positive thoughts , Healthy eating. Also regular range of motion with a trainer who understands our disease. In addition, the medical marijuana has been really helpful with spasms, relaxation, and getting sleep.

It is frustrating that there is not one formula that works for us all.

 

[CarolSue]

AZgirl,

What is the difference between regular vit D and D3? Thanks!!! CarolSue

 

[azgirl]

Carol, I am not sure what the differences are. Can't remember who recommended that D three. It may have been my primary care DR or maybe it was Nikki. She knows more about this disease than almost anyone!

 

[Nikki J]

Thanks Azgirl. Kind if untrue! D3 is the vitamin d that we get over the counter. The prescription form is D2. They are slightly different chemically. D3 is generally considered better utilized by the body- this is not specific to ALS- so it is a win/ win for us easy to get without prescription and better for most of us. If you have renal failure discuss with your doctor which kind is best for you