I've just received a supply of Methylcobalamin from B12d.org (the first one).
Used it for the first time last night and experienced quite extreme stinging and burning whilst injecting. This extended throughout the muscle as absorption took place and continued for about half an hour post injection. This is the first time I have ever experienced this reaction from either Methylcobalamin or Hydroxocobalamin injections.
The supplier is, apparently, a new one for them: North American Custom Labratories. I've looked them up on the Internet (naclusa.com) but there is little information on their website.
I've emailed b12d.org but am waiting for a reply.
My immediate response is to stop using it - but it's a lot to waste!
Anybody else experienced this?
Would I be wise to simply stop using it (even if advised that it is safe).
Any comments would be greatly appreciated.
Many thanks xx
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Foggyme
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Yes, I've experienced the same problem with B12d's new supply. I was about to email them too! (Be aware that it may be 7-10 days before you get a reply, as they're all volunteers with day jobs.)
I inject subcut. The stinging has been excruciating, and I actually chucked a couple of syringes away because I couldn't continue. Now I just literally clench my teeth to get through the jab, but my heart pounds for quite a while. I have a vial of lidocaine on prescription to help with my magnesium injections, so I've been drawing up a bit of that with the methyl, but it hasn't really helped.
Did any info arrive with it that describes the exact contents? It may be that there's some excipient in there that your body doesn't like.
Hydroxocobalamin normally contains just salt and vinegar (sodium chloride and acetic acid) which should be totally harmless (it's a very small amount of vinegar). Methylcobalamin often contains benzyl alcohol as well, which shouldn't have that sort of effect.
But I have seen other excipients in methylcobalamin from the USA. They're not found in European drugs, because the EU banned them. I guess we'll be seeing them in the UK pretty s
The batch of methyl ampoules B12d were sending out actually came from Arnike Apotheke in Germany. The current methyl that is causing the stinging comes from the US and is dispensed in multi-use vials.
foggyme, I've had an email newsletter from B12d, containing the statement: "The requests are coming in at around 140 requests per month which is exciting but at the same time quite frightening. We’re a bit behind because there was a problem with the last batch of methylcobalamin (the injections stung more than they should – however they are still perfectly safe) and we needed to try a new supplier for hydroxocobalamin with 50 orders before ordering more."
Hugo Minney also states that hydroxo from Germany is now 10% more expenisve that it was last Thursday.
Thanks Hillwoman...but I'd love to know what caused the actual problem. Really reluctant to put something in my body unless I can understand why it's causing an affect I've never had before! And one the the provider recognises 'has a problem'. But that just me!
Also wondering why 'the problem' caused them to be 'a bit behind' (i.e. Did they stop supplying it. and wait for more supplies? And if so, do we really want to be using it! It's a real conundrum!!
Did ask the question (I.e. What is the actual cause of the stinging) so will await reply.
Thanks for passing on the information...I'll let you know if I find anything else out.
They're always behind because of a shortage of funds, but in this case it will be because they've had to place a new order with the Texas compounding pharmacy. There will be a delay while they reformulate the next batch. The pharmacy has set up a special production line just for the charity, so it's in their interests to get to the bottom of the problem.
I've just done another jab. This time I used an equal quantity of methyl and lidocaine, and it was fine. I haven't had any ill-effects from this batch of methyl (apart from the stinging) and I've nearly finished my bottle. Have you noticed anything else untoward? If you have, it might be a good idea to let Hugo know.
Hi Hillwoman. I have lots of things 'untoward' on a daily basis 😄. It would be quite difficult to pin any of it down to this batch of B12, apart from the excruciating pain! Don't have any lidocaine to add so I guess I'll just have to stick with it.
Thanks Chocolate41. Pain threshold usually very good but this really is painful. But as you say, it's too expensive, not to mention difficult to get hold of, to simply throw it away.
Perhaps I'll just have to suffer the pain to feel the gain 😱!
I just called North American Custom Laboratories and spoke to the manager who was very nice. He said they have had calls about this same issue from other businesses that they have supplied and have looked into the problem. It is a PH problem and they are working on buffering their next batches so the stinging and burning discomfort is eradicated in the new batches. He says it is perfectly safe to use-- all their batches ares tested for sterility and are sterile. He said he could not give medical advice but suggested talking to your local pharmacist about mixing it with a saline solution rather than water but was quite insistent that he could not give medical advice and to definitely talk to a pharmacist before doing this.
Hello Nancy. Oh my goodness...thank you so much...what a very kind and wonderful thing to do.
I have a multi dose bottle which comes already 'mixed'. From what you say, it sounds like they have mixed it with water - that would explain the stinging, since water is not isotonic (saline is).
I have some normal saline for injection so I'm going to water it down (or should I say saline it down) before my next jab (I'm an ex-nurse so entirely comfortable with doing this - but I entirely understand his advice about speaking to a pharmacist).
Next injection tomorrow so I'll let you know how it goes.
Again, thank you so much for taking the time and trouble to do this.
If you ever come to the UK, I'll make you a cup of tea. Or better still, if you prefer, pour you a G & T.
It was my total pleasure to help out my fellow PA buddies! I figured it was easier for me to call as I am in the U.S. so it wasn't an international call. Also, I am originally from Texas and was excited to talk to my fellow Texans. Plus, I know if I had concerns about my precious B12 and didn't feel 100% safe using my supply, it would make me a nervous wreck- sounds like you and Hillwoman handled it much better than I would have!
As I said, the manager form the laboratories was very nice and even said he would have a chemist from their lab call me back if I wasn't totally assured by his explanation. I did let him know that I was a native Texan- maybe that was part of his graciousness! ha ha
I felt like he explained it to my satisfaction and I am so glad you are a nurse and understand the solution ( no pun intended). Please let me know if mixing it with saline makes it less painful- I certainly hope so.
Fingers crossed that the next batches are buffered to perfection!
Thank you for your very warm and kind reply and if ever I get to the U.K., which I would love to do, I'll take you up on a cup of "real" English tea!
Hello Nancy...and if I ever come to the states, I'll bring tea bags with me and deliver in person! Here's a thought...if you like English tea and can't get it, I'd be happy to send you some (though I don't feel it's an equal swop for single handedly putting 30 doses of B12 back into circulation)!
I'll let you know it the solution solution works 😃. Ha ha.
Hi, foggyme, Wonderful! Yahoo! I am so glad that it took care of the problem! We've found the solution!! And so glad that you can lead others with the correct info on adding saline.
Meant to get back to you on your earlier post but had family in town so am now just getting back to you, but yes, if you ever come to U.S. it would be lovely if you brought and then showed me how to make it the proper English way. I can get English tea here but I know making a proper cup of tea involves an ancient and magical ceremony, of which I am ignorant.
Your post made my day! Now no one has to waste their B12.
Excellent work and a medal for bravery for being the guinea pig in this!
Have to say though, all credit goes to you for finding the so, solution for us! I've messaged several people about this, in case they don't see the thread, and they will all now have the option of using their hard gained B12 😀. Not sure how much bravery was involved - more like desperation - and I knew I couldn't do myself harm (only extreme stingy stuff).
Think this just goes to show the power of this site: just like musketeers: all for one, and one for all 😀.
I love the idea of a strange and magical tea making ceremony. I simply drop a bag in a cup! How boring and unimaginative.
Please you had a good time with your family. Aren't we lucky when we have family to support us, make us laugh, and carry us through some of the dark times.
And yes, if I do make it to the USA, I'd certainly want to make a tea call. We could develop our own magical and mysterious tea ceremony - American style!
Thanks, foggyme! It makes me feel really good that my phone call had such good results! Yes, this is the best site. Wonderful, kind, caring and compassionate people & as you say foggyme, all for one and one for all. And here's to magical ceremonies!
Nancy, sorry I've only just found your message. Thank you for doing this - that is so good of you. I did wonder if there might be a bit too much acetic acid in the mix, and it sounds as if this might be the case. You've certainly set our minds at rest.
No worries, Hillwoman! The time difference is challenging. You are very welcome, I am glad I could get an answer for you and others who are having painful injections. Hopefully, North American Labs will get their solution buffered correctly for your next batch.
I think you and Foggyme are so brave to have used it anyway and now you can rest easy in the knowledge that you haven't harmed yourselves inadvertently!
This is such a wonderful forum and everyone on here is so compassionate and helpful, I was glad I could do my bit for the cause!
me too from the same batch and it did put me off continuing as I'm new to self injecting and thought it was me doing it wrong. Glad to know it wasn't down to my technique after all but I actually had to sit down and not move my leg for about 20 minutes until the stinging stopped. The stinging felt like it was inside and right down my leg. Feel I will have to waste this particular supply as my pain threshold is very low these days. Wait for more news.
Hi Sallybones. Oh please don't be put off self injecting by this. Methylcobalamin doesn't usually hurt at all!
If you read the rather splendid reply from ndodge (above), it seems that this is safe to use (albeit stingy) but the manufacturer is working to 'buffer' the next batches and make them less stingy. So supplies from B12d.org will be less painful next time. Phew. Relief.
And me too...I also had to sit for half an hour - and I usually have a good pain threshold! And yes, mine was all down my leg too. And I've given thousands of injections (but less than 20 to myself!). So...probably nothing wrong with your technique at all.
Take heart and keep,on with the injections (even if not this batch).
Hya thanks for your reassurance Foggyme I'm so glad it wasn't just me doing it all wrong. I will try again but not with this batch and feel I've wasted it now. I wish someone else could have it but don't know anyone where I live who uses it. If anyone wants it in the UK I would happily post it on. Don't know if that would be the correct thing to do though?
Hello Sallybones. Would you feel comfortable adding injectable saline to reduce the ph (acidity) and make it less stingy (as per ndodge post above, following her discussions with the manufacturer)?
I'm going to give this a try later today. I inject 1ml of Methylcobalamin and will add (for a start) 0.5mls of injectable saline to see if this makes a difference.
I've decided to uses it anyway...I think the benefits of having the B12 will outweigh the half an hour of pain and it's not easy to get hold of.
Fibirder recently offered up Methylcobalamin (it did not suit him) and got a taker so I don't see any reason why you should not offer it...but advisable to let people know about the extreme stingy thing.
If you don't get any takers, I'd happily pay you for it so that you can then replace it (I'll fix the stingy thing or put up with it).
Take care and well done for not being put off self injecting! Xx
Hi Foggyme would you let me know how you are after experimenting with the saline please? If it works I may give it a try but if I don't you are welcome to have it and I don't want any money for it. I would rather it wasn't wasted.
Hello Sallybones. It worked! I added 0.5mls sterile normal saline to 1mg Methylcobalamin. Hey pesto - no stinging.
Don't know if you have saline...I get mine from mycare.de. Don't think it's listed on the site but if you search for KOCKSALZLOSUNG FUR DIE INJEKTION it will appear.
Tried to check the price for you but the site is currently down for maintenance - expect it will be back up soon.
Be interested to hear if you try it, and if it works for you.
Hi Foggyme well that's brill. I will see if I can get hold of some saline. Do you inject the saline in to the ampoule of methylcobalamin and mix it that way, as the top is a fixed rubber seal? (Don't quite know the correct words).
I'm getting excited again now.
thank you xx
ps found the site and the right page but not sure which is the best one to choose. Never purchased anything from Europe before so not quite sure how to go about it!!
Draw up 0.5mls of normal saline into a 2ml syringe then swab the top of the multidose vial and draw up 1ml of methylcobalamin into the same syringe. The two will automatically mix together as the methyl flows into the syringe that already has the saline already in it.
Bit of a fiddle as you'll have to do it every time you inject...but very quick once you get the hang of it...and well worth the result.
You'll have to 'snap' the top off of the glass ampoule that the saline comes in. Hold the top bulb bit between you finger and thumb and pull sideways and down with firm pressure. It will snap quite easily and don't worry, the ampoule is strong so the body will not shatter easily.
(I'm assuming that you are using the 1mg in 1ml dose vials). But it would still be 1ml if you were using 5mg in 1ml dose vials - if you get what I mean. Silly me.
I've been using methylcobalamin from the charity too for the last 5 weeks. They said it's from a new supplier and it's my first time of injecting. Mine is 5mg and I do it in the muscle of my thigh. The only time I've had a slight stinging is when I do my left thigh, but only for a few mins. I put it down to using my left hand when I'm right handed. It's a little wobbly! I am going to try buying it from one of the sites that several forum members have been kind enough to tell me about When this bottle finishes. I do wonder if hydroxocobalamin will be better.
Good to hear from others using b12 from this charity and the stinging is common, it's not just me!
Hi LtAngua52. The batch I had was the 1mg dosage - it may be that if you only get a slight sting, then the 5mg batch you have may not have been affected. The pain was excruciating and ran through the muscle and down my leg!
Ndodge, who lives in the USA, (see reply above) has kindly telephoned the supplier and it appears that this batch is safe and the next batch will be much less stingy (they are going to 'buffer' it to alter the ph (level of acidity) Hurrah 😀.
When I've injected Methylcobalamin before, it has never stung. Sometimes if you get a bit of methyl on the end of the needle before you slide the needle in, this can sting when the needle is inserted. Also, if it comes straight from the fridge, this can also cause discomfort.
Whatever the cause...it's not you!
The only other sources I know for Methylcobalamin are Oxford Biosciences and Vita something or other (too late for my memory tonight!). Vita something or other is very expensive and the postage is exorbitant!
If you know of any others methyl suppliers, please could you let me know so I can have a look.
Oh I do hope the next batch doesn't sting for you. It's bad enough being ill without extra pain!
FYI it's intra vita. I had been looking at that and it is definitely more expensive. Didn't know about the postage though. They would do good business from us on this forum if they had the foresight to come to some sort of arrangement with members of the Pernicious Anaemia Society. Worth a thought isn't it?
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