Eligen B12 claims improved absorption due to SNAC. The testing was done on a small number of "normal" subjects - and the paper is from 2011.
Any opinions on whether it has any role whatsoever in confirmed Pernicious Anaemia? Or even just B12 defiency that does not appear to resolve by using standard oral B12?
Pharmacokinetics of Oral Cyanocobalamin Formulated With Sodium N-[8-(2-hydroxybenzoyl)amino]caprylate (SNAC): AnOpen-Label, Randomized, Single-Dose, Parallel-Group Studyin Healthy Male Subjects
The first thing I notice is that there has been nothing at all done with this since 2011.
The second thing I notice is that they used just 4 or 6 volunteers in each group. This is nowhere near enough to get reliable results.
The volunteers were all healthy, there you cannot say if it would be good for those with an absorption problem.
But it's the first point that is most telling. If there were anything to this at all then I would have expected them to have published results from bigger, better studies. The fact that they haven't means that either - they didn't do such studies (why not?), or they did and the results weren't quite as spectacular. My money's on option 2.
Yes, but the fact that they've not done anything towards getting it passed as a solution for medical use means that they've not been able to find anybody who is impressed enough to try and market it.
Although B12 itself isn't patentable, a new delivery mechanism would be. However, they patented their ideas for new delivery mechanisms of B12 (several) in 2011. That would only give them another 10 years of profits if they got it licensed tomorrow.
I still think that they found it doesn't work as well as they said it does.
SNAC was in a succession of clinical trials in oral formulations with poorly permeable actives since the late 1990s, culminating with approval for cyanocobalamin as a medical food for vitamin B12-deficient anemic subjects in 2014.
Yes, they got it approved as a medical food. As your second link says -
"It is important to note that this oral form of vitamin B12 was approved under the regulatory pathway for medical foods, which does not have to meet the standards required for drug approvals"
Point about stability is interesting. Can you provide a reference for that?
I am afraid I am very confused about B12 supplements. I've had injections that worked well, and am now doing sub lingual methylcobalamin which works well, although I have just changed brands. I have done the cyanocobalamin pills on prescription, but as I was expecting they only give me modest improvement (the dosage is much lower). All my comments here are based on blood test results. If I stop supplementing my B12 goes down to levels that start to concern me.
One other point is I have had the stomach antibody test, the one that destroys B12, and don't have that problem.
Apologies fbirder, I should first introduce myself as a leukaemia patient, and explain that I don't have PAS. I have experienced very low red cells and haemaglobin from the results of chemo in 2014/2015. That resulted in need for x9 transfusions before my red cells recovered. I also assume chemo was the cause of my B12 issues. I am extremely happy though the chemo treatment worked well for me.
I follow Helvella as he posts on many interesting things. So thank-you both for your B12 discussion.
Now I'm thinking the hydroxocobalamin is the injected one, and the methylcobalamin the one you typically get in the sub-lingual (place under the tongue) treatments.
Of the three types I've purchased the methyl one, and tried the other two on prescription. I won't give any brand names as potential advertising on HU is not appropriate.
I can only give my own results and there are no doubt several different reasons for B12 deficiency so different people may behave differently to the treatments I guess.
All my B12 results were from blood tests at typically 6 month intervals. I'm not sure going forward though if I will continue to get regular testing, which does concern me now I'm buying non-prescription stuff.
The cyanocobalamin that didn't work particularly well ( only modest rise) was an experimental prescription by a hospital locum. The hospital pharmacy were surprised and said they no-longer kept it in stock because of the poor efficacy, so had to order it in.
All that said if the methyl is problematic (and high cost as you said) then once I've got back to decent levels again, then cyanocobalamin pills might be good enough for maintenance therapy.
I think the answer is regular testing is required for the individual to see how bigger problem (or not) they have.
My big area of confusion is every different doctor I meet has a different view, such that I'd still like testing but really don't want to discuss treatment plans, because the next doctor never agrees with the last ( I guess, but only guess that the reason for that is simply financial).
Thank-you for reading.
I'm happy to unsubscribe from PAS if anyone thinks its inappropriate that I read posts here.
Ernest2. Please keep reading....you’re most welcome in our forum...and so pleased that the chemotherapy worked well for you.
As a side note, some medics do prescribe vitamin B12 for some forms of chemo - it not sure what chemos they are.
Also - but briefly - the cyanocobalamin tablets prescribed in the U.K. are very low dose (50mcg) and only recommended for dietary deficiency. It may we’ll be that the other purchases you made were much higher dose, so that may be why you felt they were more effective.
Blood testing following any form of B12 supplements is not recommended as a way to manage B12 deficiency (levels will always be higher because of the influx of B12 and won't tell you anything about an ongoing deficiency - that is unless you stop treatment and leave it for several months (or sometimes much longer) before testing again.
The only way to monitor and manage B12 deficiency is through tracking and monitoring the symptoms of deficiency - if you stop B12 and symptoms return, then abate if more B12 is taken, that's a sure sign that deficiency is present and still needs treating.
Best wishes for continued health and, as before, you’re more than welcome in our forum.
I've popped back to add
1) many here don’t have PA (it's often difficult to get a definitive diagnosis) so some have B12 deficiency without having a PA diagnosis (and there are many causes for B12 deficiency).
2) there is no one best or better form of cobalamin - some forms suit different people - for reasons unknown. And some take several different cobalamins at the same time after finding that different forms work for different symptoms (for them, at least). It's sometimes a matter of trial and error seeing which forms suit each individual.
4) Not sure if you’ve been having oral supplements or injections (apologies - no time to read properly). Many with B12 deficiency find that injections are more effective - especially if absorption problems are present. So...if you've been taking oral supplements and you still experience symptoms or periods of ill health that you think are due to B12 issues, might be worth trying injections (if you haven't already). Oral supplements are only recommended (in the U.K.) for those with dietary deficiencies of vitamin B12.
3) please feel free to read and/or contribute, as you see fit. Sometimes just a few kind words to those who are struggling goes a long long way 😉.
I guess the cyanocobalamin pills are typically in low dose(?)
The point about stopping supplementing for say 6 months is a good one. I did do that for the last 6 months of 2019 and the B12 headed downhill. The daft thing I did was save the methyl based stuff I had which was I think a mistake. Only in the last few weeks I've started a new one.
Hip pain (which causes loss of sleep) was my driver. It did return at the end of last year and is only just going away now on the new B12.
However there are many other drivers for hip pain, and I'm still trying to build my strength after losing a large amount of it (and weight) to chemo. Just been diagnosed with very high cholesterol so I'm probably not going to be able to increase my weight and may lose a bit more now.
Not sure if you've seen it because I was editing whilst you were posting...but I've added a couple of comments to my original reply, that might help.
As you stopped B12 and your symptoms came back, and then resolved with more B12 - that's a therapeutic trial and demonstrates that you do need B12.
If you plan to take oral supplements, aim for a dose of between 1000mcg and 5000mcg (only approximately 1-3% will be absorbed). If you plan to have injections then the dose in the U.K. is 1mg in 1ml (all of that dose is absorbed). If oral supplements work for you - all well and good. If the oral supplements don't relieve all of your symptoms (and most especially if you have neurological symptoms), then it’s better to speak to your GP about commencing injections (may be difficult to persuade them to do this because your B12 levels will be within 'normal' limits (many fail to account for the effect of supplementing and don't realise that normal means nothing following any forms of B12 supplementation). Any GP who is knowledgable about B12 deficiency will understand this - but many don't. And with your medical history...it's likely that you should have been having B12 injections anyway.
The aim of B12 treatment (whether oral or injection) is I take enough B12 (whatever the form or route) to remain symptoms free (if symptoms return - particularly before an injection - that means injections are needed more frequently. If symptoms aren't controlled on oral supplements, that means you need injections.
If you do want to try injections and your GP is reluctant to prescribe, post again and we can point you in the direction of relevant guidelines that you can use to persuade them.
Some here (many) are forced to purchase and inject their own B12 (quite safe and from reputable suppliers)...so again, if this is a route you need to take, post for advice. However, it's always best to do this as a last resort, rather than it being the first port of call - always best to get GP on board and gain treatment that way (if oral doesn't suit).
Note about your high cholesterol - being short of B12 and/or folate can cause homocysteine levels to rise - and this in turn can cause cholesterol levels to rise. Worth getting folate levels and homocysteine levels checked. If homocysteine is high, then treating B12 deficiency (and folate deficiency, if you have it) will bring homocysteine levels down and this in turn will have a beneficial effect on your cholesterol levels (if that turns out to be one of the cause).
Sorry about the hip pain - that must be throughly miserable - hope the B12 continues to help. You’ve battled through so much...sure you’re up to dealing with whatever's going on now.
Apologies...I've had to be in a bit of a rush here so have probably repeated and 'scrambled' myself along the way 😳🤣. Hope I've made sense and not left you more confused than when you arrived!
Good luck...please do post again and let us all know how you’re getting on.
Apologies helvella - seem to have overtaken your post (my fault entirely 😮)...which is pretty impressive (if naughty)...couldn't overtake a mouse at the moment 🤣). Oops x
Now having been Folate deficient before, I guess I could perhaps be deficient again so will try to get a test on that (got a GP appoint already booked for a few weeks time).
(Postscript: Last time though it would very likely have been the effect of recovery from Chemotherapy which isn't the case this time. I notice in all this that I'm often not thinking clearly these days which is a B12 deficiency symptom)
At the end of last year when the Cholesterol test was done was the end of my 6 months off from B12 supplementation, when my B12 level went low again (from blood test).
So I guess the Cholesterol issue could be caused by either B12 and/or Folate.
Thanks for the links Ernest...added to reading pile 🤣🤣.
And yes...it does sound like symptoms of B12 deficiency...and the fact that your B12 levels dropped after a six month break from supplementation... highly indicative of absorption issues and ongoing B12 deficiency (don't know if you take PPI's...these can impede the absorption of vitamin B12...as can other medications (metformin being just one other).
Good luck and apologies for the delayed response (spoons currently in short supply 😬).
Good luck and be interested to hear how you get on.
After some investigation, it seems that this product was originally released as an Rx only at a much larger cost. (~$200 USD/mo) The US FDA reclassified it as a dietary supplement and available OTC. The fact that it can be absorbed through an enhancer (SNAC) without the need for IF is very interesting. Here in the horrible US healthcare market, I pay $135/mo for my injections that is not covered by my greedy insurance company, even after multiple grievance hearings stating injections were the only treatment that would be effective for my PA.
For the cost difference, I think it is worth a shot since it can be purchased through Amazon for less than $40 USD.
But the evidence that it is absorbed at all in people with PA is zero. And there’s no good evidence it is absorbed better than normal B12 in normal people.
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