I had hydroxocobalamin prescribed by a private Dr a couple of years ago alongside an iron infusion.
I have positive parietal cell antibodies and stomach inflammation showed on a endoscopy so it's autoimmune gastritis related B12 deficiency and will therefore be lifelong as with true pernicious anaemia.
I went onto loading doses SI 3 x a week for 4 weeks then moved to weekly injections. At that stage I began to get quite a severe skin reaction, large red, painful, itchy welts at the injection site that took between one and two weeks to clear. It's clear my body dislikes something within the injections.
I'm in limbo now, I SI a few times last year but still the same issue. I think I probably need to try cyano or methyl as an alternative. Be interested to hear from anyone in a similar position? Suggested suppliers etc. Thanks
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myownscientist
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Thanks sleepybunny. Yes in the UK. My private Dr said to try taking antihistamines the day before, day of and day after a jab but I didn't find it made a huge difference. He's pretty stumped I think but did say he has a handful of patients who have had the same problem. No anaphylaxis symptoms at all but am aware any allergy can worsen and any time. Never been to an allergy Dr. As my NHS GP doesn't believe my B12 was low enough, and they retested my parietal cell antibodies which then came out negative despite being positive on a previous test, I really don't think I have much hope of convincing them I have a B12 issue at all. They left me with Ferritin under 10 for over 15 years - so not the best record on vitamin deficiencies! I'm a member of the PAS and have also reached out to them for advice by email one of the things they suggested was to ask on here. It's very frustrating as I believe I have an issue with absorbing B12 but can't access the right treatment currently for it and worried about long term effects. Thanks for B12 info I have not come across that page before.
Hi there - I've had P.A. for over 52 years and I had the same bad reaction to hydroxo when I was changed from cyano onto it back in 1985 when it was first introduced so I went back onto cyano. If you are in the UK NHS have made cyano "unprescribable" and the manufacturers of Cytamen (cyano) are no longer producing it making it impossible to source within the U.K.
Are you in the U.K?
There are others on here who may be able to help sourcing cyanocobalamin from elsewhere
Hi there clivealive. Yes I'm in the UK. My GP doesn't seem to think there's an issue with my B12 so I don't think I'd have much luck getting it prescribed there even if possible. I do have a private Dr who can prescribe through an online pharmacy however if it may be available through that route. Or open to buying it online myself if that's possible, I'd prefer to do first dose somewhere safe however if possible. Do you take cyano?
I SI hydroxocobalamin and am finding my skin reacts badly to brands which contain sodium acetate. So now - IF my local pharmacies can source any - I have to go in and check the brand and ingredients! I think they're getting to know me quite well...😂 Seriously, I thought all brands were the same but they're not.
Mine says the below. Is acetic acid the same as sodium acetate I wonder? The brand is 'accord'. Have you had that one?
Each ml contains 1.04mg hydroxocobalamin acetate (equivalent to 1mg hydroxocobalamin). Also contains sodium chloride, acetic acic and/or sodium hydroxide and water for injections.
No, the sodium acetate is an additional ingredient in quite a few if not most brands. Accord is one of the few brands I'm fine with! Have you tried several brands?
No I've only tried this brand so far. Weirdly I was fine on loading doses it was only when I started going a week on between that the reaction started. Most frustrating when I thought I was finally getting somewhere.
I'm not sure re: GP, I could ask but I'm not sure they would prescribe. I might have to try them as if they agree to prescribe they may then have to investigate the allergy (if happens with their brand also).
Just re-read and am I right to think your loading doses were from the private GP? If so, contact them to ask which brand they used? However, my original Accord packs didn't mention "acetic acic and/or sodium hydroxide", just acetic acid. So maybe they've changed their formulation - my pharmacy hasn't been able to get it for a couple of months. We really don't need all these extra issues, do we??
Thank you yes I had a private Dr who is a iron deficiency/ vitamin deficiency sort of specialist but actually an anaesthetist by trade. He's part of the group CluB12 if you've heard of them. He started me on the B12 at the same time as my iron infusion. Ah interesting re: the accord the box I have is actually a couple of years old (I've procrastinated about getting this sorted again for ages!) so maybe they have changed their formulation since then. Im totally up for trying a different brand just not sure how to engineer it to happen. I've messaged the private pharmacy he used to prescribe them to me to see what they stock and whether he can prescribe by named brand. If I need to go cyano or methyl though I think I'll have to source myself.
I saw the same specialist! I was also going to do the same. In the meantime I have managed to get another acetate free brand through my local pharmacy, Neo-Cytamen, made by RPH Pharmaceuticals AB in Stockholm, and it's good for me.
Oh wow isn't he brilliant! I emailed the online pharmacy and they said that was the one with the least ingredients so may be worth me trying to get Dr Andrew to prescribe me that particular brand through them. They also had another called Cobalin H they can get but that has a few more ingredients.
Yes I ❤ him! Sounds like the fewer ingredients the better. I will contact them too, as although I get B12 prescribed by my gp, if the pharmacy can't source me a useable brand I need backup. Hope it all helps you.
Yes checked for coeliac by both blood tests and endoscopic biopsies, all negative. I managed to get an NHS endoscopy that but the NHS gastro just noted that it showed 'mild unspecific inflation' whereas my private Dr albeit not a gastro said from the lab report that was consistent with findings for AIG. The GP re ran the parietal cell antibody test whilst I was on B12 shots and that one came up negative, my one only a couple of months prior to that before starting B12 at the Nuffield hospital had been positive. I could push the NHS GP further but I'm in a position where they have a difference of professional opinion I guess.
Hello myownscientist, I do not understand the reason your GP has not accepted the Nuffield parietal cell antibody test result, particularly as that one took place before you started on B12. I would take the result printout and question this with the GP. I would certainly expect the GP to accept this as proof, along with your symptoms. I have not had allergic reactions to B12 injections, but severe stinging and have found Pascoe hydroxocobalamin much more gentle if you can maybe buy some and take to your GP's for injection in a safe environment.
I bought some cyano online, by mistake, and decided to try to see if it made any difference. Compared to the hydroxo I could not even tell I'd had the injection. I don't know if you have already received information about methylcobalamin in the UK but there is methylcobalamin powder available from Oxford Biosciences and you have to buy saline from Germany to mix and inject, again in a safe environment. Oxford Biosciences may even be able to confirm the presence or not of any ingredients you believe may be causing the allergic reaction. The other option is to order methylcobalamin online from a US pharmacy and have it shipped as a vitamin supplement. I have priced this recently at $55 plus postage for 10 injections in one container. The main problem is that allergies can get worse with each exposure . Good luck sorting this.
A further thought ..... Whilst I was plucking up courage to self-inject I tried Solgar sublingual Methylcobalamin 1000mcg daily from Amazon which did improve my symptoms considerably. You would need to confirm that they are safe for you to take, bearing in mind your allergies, but that might be a way forward to avoid injecting.
Thank you. I've looked back at my online GP portal and I did indeed send across the Nuffield results as a scanned document at the time along with my private Dr's letter. I asked for a follow up blood test 6 weeks after my iron infusion for blood count/Ferritin etc but they took it upon themselves to re-test the parietal cell antibodies, intrinsic factor antibodies and the TTG ones for coeliac despite me having provided the results of all of these having been done 6 weeks prior. Then as it's negative I'm actually 'fine' it must be a miracle. They don't believe my results were ever low enough to show an issue (200ish was my lowest).
I did see re the powdered methyl it all feels a little DIY to me but if I'm sensitive to all Hydroxocobalamin I might have to consider.
I'm on a B12 spray from Holland and Barrett just now but a little early to say whether it's working yet.
Do you have the ingredients for your Pascoe Hydroxocobalamin to hand so I can compare to the accord brand that caused me the issues? Thanks for all the help. It's really frustrating 😔
The Pascoe hydroxo has a label in German and I'm afraid I cannot translate. However it does say 'hydroxocobalaminacetat' on the box. You could maybe check online at a German pharmacy website for a list of ingredients, or the pascoe website, and translate with an online tool.
You are obviously using the B12 spray sublingually and there are people who do manage with this method of medicating in the longer term and do remember the Solgar too if the spray is not sufficient. We are all so different in the path we take to better health which makes your issues even more of a challenge.
The fact that you sent your results to the GP at the time does not mean he/she has remembered this. I had blood tests done at a Spire hospital and even my sceptical GP accepted them and agreed with a PA diagnosis and I do not understand the reason your GP has not. I really do think you need to remind GP about those tests and request this is accepted as a firm diagnosis of PA and then maybe that would open doors to investigate appropriate treatment for your PA via your GP.
Yes but only because I paid for a private iron infusion in 2022. It was when that private Dr looked over my history of blood results he picked up about the B12 also. I had been treated briefly with iron tablets and Folic Acid for low folate prior to this but he helped me put it all together into a full picture of trouble absorbing vitamins in general.
I order from Germany and used the Rotoxmedica/Panpharma brand for ages, but then started experiencing stinging on injecting and soreness after. This had never happened before and a few people noticed it on here. I switched to Pascoe and have no probs at all. Again, a few people have noted it seems 'gentler'.
It's hard to know what to switch to/from when you don't know what you've had already tho. As others have suggested, finding the brand you had would be a good start. If it was the brand I mentioned, this might explain the change in reaction.
After that, the next step would be finding out what brands add to suspend the B12. I recall some people find ascetic acid problematic as do some with the cobalt.
As clivealive says, some people just have to go onto cyano and inject more often. Unfortunately it looks like you'll have to try various options to rule out the causing factor.
Good luck with it all. Glad to hear you have at least one understanding doctor though.
Thank you. I do have the box of what I was using details below. Do you have the same details for your Pascoe pharmacy brand from Germany?
The brand is 'accord'.
Each ml contains 1.04mg hydroxocobalamin acetate (equivalent to 1mg hydroxocobalamin). Also contains sodium chloride, acetic acic and/or sodium hydroxide and water for injections.
Hi. My leaflet was in German, so I've had a look on Pascoe's website. Here's the info:
1 ampoule of 1 ml contains:
Active substance
Hydroxocobalamin acetate 1500 µg
Excipients: Sodium chloride, water for injections.
So it looks like there's no acetic acid, or sodium hydroxide in this one.
I checked an old Panpharma leaflet and along with Hydroxocobablamin, it has:
Sodium Chloride, Sodium acetate, acetic acid, water
So there's clearly a difference there. I had used the panpharma brand for ages, but I and quite a few others noted this stung terribly on injecting when I bought a new batch last year. It left me with a red mark on my leg for a day or so and the muscle/tissue feeling sore for about a week. None of that with Pascoe so far and I've had around 10 of those.
That is super helpful thank you so much. I am obviously hoping it is the acetic acid that is the issue so would make sense to avoid the similar sodium acetate I would guess also...I have potentially found a way to trial the Pascoe so keep everything crossed for me!
I also have the same reaction with itchy, red welts but I'm more fortunate that it only lasts a few days. I inject every other day though, so I always have one itchy patch! I also saw Dr K and he knows about my reaction, suggesting a sensitivity to cobalt. I use arnica cream now which eases the itch for me and the redness goes sooner too. Please do re-post if you find a brand that doesn't give you this reaction, as I'd be keen to try it!
Will definitely report back. It may be that I am just a bit sensitive to things (I react to bites badly for example) but hopeful of finding a long term solution to be able to properly treat myself
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