I went to another neurologist today hoping for a new insight for my PN.

I was surprised that he prescribed me with a supplement called Metanx. I never heard of it so I was excited. After getting it from the local pharmacy, I immediately checked it online what's it for -- it's for the treatment of diabetic neuropathy. He said that he never prescribed it until more and more studies have come out for the past 10 years about the efficacy of the supplement. I'm not sure if I heard my new neurologist said about FDA approved but a prescription is needed to buy so I assume its FDA approved. He said about some patients who had success in using the supplement.

Although it says on the literature online that it should not be taken with antibiotic. But there was no mention of specific antibiotics. The doctor knew my antibiotics, so I guess it's safe to take it.

I will start tonight taking it...I hope it'll help me some.

If you search Metanx here you'll find posts on PN about it.

It is a medical food, and not a drug and does not have DRUG FDA approval. Medical foods are a separate category at the FDA.

It has high dose methylfolate, activated B6, and methylcobalamin in it. You should take it on empty stomach if you want the benefits of the B12. That is all it is.

Here is the insert:
http://www.metanx.com/helpful-resources/package-insert/

The antibiotic statement is near the end. I have not heard of this statement before.
I'll have to search this quote. B12 is excreted in the bile, and some may be reabsorbed in the intestine, but that has always been unclear in most of what I have read...not proven therefore.

It is always best to take methylB12 on an empty stomach...for best absorption.

Thank you Mrs D for your comments/insights, as usual. I am excited because its something new. At least something new is prescribed to me. Anything that is new gives me hope for improvement.
I am in a dilemma, though, to start because of the vit b12 component. I have bloodworks in May that include vitB12, I want to get my real numbers without supplementation.

Btw, I am taking vit d3 because Rifampin, one of my antibiotics affect the absorption of vit d3 and you know what my number last march 7---it's 66.5 (Vit D, 25-hydroxy). I'm taking 4000mg+. I'm happy that its a good number, unfortunately it does not help my pain. I still take it for my lungs.

Thank you for all your help.

That is great about your Vit D.

The reason Metanx is RX is that it has 1mg or more of folate in it.
That is the only reason. FDA requires an RX for 1mg or more of folic acid or folate.

It is up to you to decide when to start it. It should be taken on an empty stomach for best absorption.

You haven't been on B12 at all before?

I have been on Vit B12 methylcobalamin a few months after my PN started. Got it from you. The last b12 test I had was August 2012 and my result was 1999. Since then I take my vitb12 twice a week to comply the 5000mcg (mine at home is 2500mcg). I will have my b12 test in May so I want to stop it so I can see my real number without supplementation. I remember, though, in one of your posts that only 3 days is required to flush out all b12 in the system. I hope I remember your post right. :-)

I have been on MetaNx for several years. Originally started because of homocysteine levels. Express Scripts has posted this message:

Drug Discontinued
Unfortunately, METANX 3-35-2MG has been discontinued by the manufacturer. By law, the Express Scripts Pharmacy can no longer fill prescriptions for this medication.

Recommended Next Step
We encourage you to discuss this issue with your doctor. Your doctor should be able to explain why METANX 3-35-2MG was discontinued and can recommend an alternative medication for your needs.

So, not quite sure what to do, I stopped taking it. Not sure if it is related (but am suspicious it is), but blood pressure has become elevated (especially systolic), mouth ulcers have appeared, and tingling/burning in feet is noticeable.

Fortunately, I have a supply and started retaking it last night. Last two BPs are much better. If all things improve then that will strongly suggest I need MetaNx or equivalent.

One of the things that concern me is the high level of folate in MetaNx, especially with some studies that suggest increased risk of colon cancer with MetaNx.

Assuming that things do improve, then what? Is there an alternative? From my reading here, my hope of finding another Rx solution is slim.

Does this make sense:

Ignore the folate component.

Find a supplement for activated P-5-P (which one and how much)?

Find a supplement for Methylcobalamin (which one and how much)?

Would something like Neuropathy Support Formula from the Neuropathy Treatment Group be a reasonable option?

For my situation, should I focus on B6, B12 or both?

First post -- great information here!

I am not surprised. This was way overpriced to begin with, and some insurances refused to pay for it.

All 3 ingredients are OTC anyway.

If you are not low in B12, you can use the B-right by Jarrow.

http://www.iherb.com/Jarrow-Formulas...eggie-Caps/110

Or if you want higher levels:
P5P separately-- one a day
http://www.iherb.com/Now-Foods-P-5-P...60-Tablets/740

Metafolin 800mcg-- one a day
http://www.iherb.com/Solgar-Folate-A...-Tablets/13961

Methylcobalamin 1mg any brand on an empty stomach -- one a day.

There was quite a bit of methylfolate in Metanx... you may not need that much. It is the reason it was on RX. FDA only allows less than 1mg OTC.

Metanx was a good idea, but they didn't enteric coat it...to protect the P5P. They didn't specify empty stomach for best absorption of the B12.

There have been some recent studies showing no effect on homocysteine etc, and that may have contributed to doctors declining to order it. However, the ingredients remain important for PN and some other neurological uses.

mrsD,

Thank you for the information. Things are noticeably improving for me. I have an appt tomorrow with my PCP and need to figure out what I want to do. As an aside, Express Scripts is making me go through loops to get my Benicar Rx refilled which adds to my anxiety. Why go to doctors when you can use bureaucrats in big government run health systems!

I am coming to grips with the fact that my MetaNx Rx will no longer be filled by Express Scripts. If I want to continue with MetaNx ordered directly, it looks like it will cost ~$150 for 90 day supply.

I think your suggestion to buying them individually makes more sense. Especially since B12 can then be taken on an empty stomach.

I have been taking 35mg B6 and 2mg B12 daily. I think I would like to keep that level since I know it works.

3000 mcg is a lot. Your suggestions are appreciated.

BTW, do the folks on the forum have a preferred B12 brand?

Thanks

Mike

Mike, I use Puritan's Pride methyB12. They came out with it
2 yrs ago, and I decided to test it out. So I took 5mg a day and had testing about 3 months later. I tested out at 1999 (which was the lab's highest calibrated amount). My doctor was stunned, as she told me B12 doesn't work orally!

I've been using that which I get from their big sales once a year.
This buy one get 2 free is the best deal. But recently a member here pointed out the Kirkland (Costco) brand just available at Costco for 250 tablets 5mg MethyB12 for $19.99! So we were almost out of Puritans, since both my hubby and I use it twice a week, and therefore, we bought the Costco one instead. The Costco one works out to 6 cents a pill! Can't beat that price!

The Puritan's sale has just started so take a look at those. They have both the 1mg and 5mg methylcobalamin in 30 ct bottles.
Read carefully because they also offer the cyano on the same page and they look very much alike on the monitor!
They are small soft cherry discs which dissolve very quickly. I just chew them up and swallow with a little water. (no food).

In the past we all used Jarrow brand, because that is all there was basically. But over the last 10 yrs, other places have now started making it more common to find. Walgreen's also has it in their stores now! That means there is knowledge and demand for it and that makes me happy...that people are learning more about it. (and hopefully their doctors, too! )

Puritan's Pride says, Directions: For adults, take one (1) microlozenge daily, preferably with a meal. Place microlozenge under tongue for 30 seconds before swallowing.

I thought B12 should be taken on empty stomach?

Also, they cost $12.99 for 120 - 5mg or 0.22 per pill which is pretty good?

Jarrow Has Xylitol as the first other ingredient in it of which I am not a big fan.

Wow - Kirkland Signature™ Sublingual B-12 5000 mcg., 300 Tablets $19.99. We do not have a CostCo -- gotta see what it costs to order online.

BTW, I have been taking MetaNx daily. I was going to do the same with B12, but double the dose. However, you say you take it twice a week. Will I be over doing it?

Thanks.