Possible allergy to b12

[brenanddave]

Good morning! I developed a rash a week ago that covered my body and made my lips swell. The doctor suggested stopping b12 and cofactors. He felt it was an allergy to meds and wanted to try these before my heart meds as they would have to be eliminated at the hospital Anyway! I have had the course of steroids and antihistamines and the rash disappeared I started back on b12 daily and cofactors and after my third which was 630 in the morning, I woke 2 hours later to the rash starting. Please can I have advice? I have been having twice daily b12 for a month leading up to it so strange it would suddenly cause an allergic reaction. I went back to the doctor and he suggested stopping b12 again and taking antihistamines. When I said I could not stay off b12 for long, he went off and did a print off of my b12 over 4 years and because the levels were mostly just over borderline he started discrediting me having PA and said the numbers were ok and said anything could have brought the down like that and though by the normal doctor said to me I definitely had PA even without IF being positive, though I did test pos for Parietal cell antibodies and he believes I have SACD h this new doctor refused to accept that I could possibly have as much peripheral neuropathy as I had stated. It was so upsetting. So, in his mind just don't take b12 and sent me home. My question is

! If it is b12 I am reacting too how do I deal with it? This morning, no b12,no antiistimine no rash. Thank you for your time x

[jade_s]

I'm so sorry to hear this brenanddave! It's very very rare but it is possible to develop an allergy to b12 even after having been on injections for some time.

I would suggest working tbrough it methodically. Only restart one thing at a time, e.g. only B12, and don't restart cofactors yet, see what happens. If still reacting, try lower doses eg half an ampoule.

In parallel, I would contact the manufacturer of your ampoules to ask if any formulation changes have been made, or a bad / contaminated batch, or similar. You could be reacting to something else in the solution besides the b12.

Have you recently switched brands/forms of b12?

There is a desensitization protocol used by several clinics, i can look it up for you if you want. It basically involves injecting very small amounts at first and slowly increasing.

[jade_s in reply to jade_s]

The papers describing the desensitization protocol are listed here in my reply on this thread - scroll all the way to the bottom healthunlocked.com/pasoc/po...

Hopefully others will be around in a few hours to give more suggestions

[brenanddave in reply to jade_s]

Thank you so much Lade! Yes, I would really appreciate that I did use a different batch to the normal ones I use from Australia.I live in NZ and used some I got from a script from my doctors. Thats when the allergy happened. When we compare them there was a slight proceedure difference in making it though it was supposedly otherwise the same. I wondered if was sensitive to that. I stopped them and after the 4 day break from b12 started again with my original ones. It was all good till the 3rd one and the allergy started about 2 hrs later. It may be that the steroids in my system just happened to leave my body at that time and thats why the rash happened. Maybe it is one of my heart meds as I kept taking them. Or a co-factor. aahhh So difficult with out medical support

[jade_s in reply to brenanddave]

Oh dear yes very confusing situation, I can imagine. I know Panpharma is used in NZ (rebranded) and the shortage affected you too But troubling that going back to the original one seemed to cause issues - hopefully it's not the (original) b12 & it's something else as you say 🙏

[brenanddave in reply to jade_s]

Yes! The letter from the lady with the allergy sounded just like my situation. Maybe it is coincidence and it is just the cobalt I am allergic to not the proceedure ? I am thinking to leave it another day and try b12 again once again without co-factors.T he doctor gave me an epi pen as I had an anaphylaxis reaction to a wasp sting years ago and so get them free . At least I am armed with that if things go sideways.

[Nackapan in reply to brenanddave]

Horrid .A case of elimination.

I have to avoid one brand of b12 .

Twice reacted badly .

It was the mix of additives.

Something extra in it.

Might be worth looking into that .

All on the leaflet in side the box.

An ex forum member looked into the additives as did the pharmacist where I collect my prescription.

Additives can change even with the same brand .

Very difficult for you .

So the new b12 seemed the problem initially?

Hope resolved soon.

[brenanddave in reply to Nackapan]

Thanks Nackapan! I appreciate more things to check and be aware of going forward on this journey.Funny! I was feeling very overwhelmed and upset at the lack of care and support from the medical field. What I am reminded of is how blessed I am to have such an amazing support and care from all of you guys. The wisdom from this group is very empowering. x

[am111]

skin rash is a common side-effect of B12 shots, especially very high/frequent ones. You may want to reduce the frequency/dose. Also, the type matters. Generally, rash is more common with hydroxy and methyl while cyano gives less rash, you can try changing the type or the brand you use, as the rash could also be due to some impurities in the B12 injection.

[brenanddave in reply to am111]

Thanks 111, Yes! That is something we are thinking. I am going to see tomorrow after a 3 day break how it goes.If no rash I will try EOD! Fingers crossed

[newlandvale]

It is possible to have a skin-prick allergy test for cobalamn (in the uk at least). That would decide if it is the essential B12. I had one done a while ago when I had a neuropathic prickly itch - no rash or swelling. Doctors had hoped to get me off B12 but it came back completely clear😄.

I do develop eczema with co-factor tablets if colours added to the ingredients

[scnuke]

It is all so very complicated to sort out when you have an exhaustive list of medications and illnesses. But jade_s has a good idea to do a process of elimination and addition. This is just my thought, but I would stay on the B12 and first eliminate all cofactors. What ones are you taking and at what dose and frequency? If you do not develop more rash after two weeks, add back one cofactor every two weeks. Unless you have been shown to be folate deficient, stick with a daily dose of 400 - 800 mcg. I took the recommended by some 5mg dose and had horrible side effects. Add things back in one at a time and see what develops. By spacing them out you will have an easier time knowing which medication may be the culprit. It may not be anything related to your PA, but something else, but do not stop any heart or other vital medication without close supervision. Sometimes it seems we must be our own scientist. Good Luck!

[brenanddave in reply to scnuke]

Thanks Snuke I stopped b12 and co-factors 5 about days ago then 3 days ago I had a b12 inj at 6.30 am, no co-factor,. Went back to sleep and woke at 9am to the rash back. I took antihistermine and it stopped it in its track. Now I have waited a further 3 days and am going to try b12 tomorrow again. No co-factors and all going well another in 2 or 3 days. Cross fingers it will be fine. It could be a covid rash!! I read you can get it sometimes after covid. It would have been two weeks after I tested positive.I was put on 4 days steroids so maybe when it returned the last bit of steroid had left my body and it was a mere coincidence the timing, Heres hoping lol

[jimmel196]

Try a different brand of b12. You are most likely having a reaction to a preservative or something in the b12 you are using.

[brenanddave in reply to jimmel196]

I've got about 40 of them Trust me!! I'm hoping its not them lol

[jade_s]

brenanddave in case you're still having trouble getting the 'good' B12, the weather is starting to cool off here in Europe so tomorrow would be a good moment to order from here if you want. apohealth.de/en?redirected=... ships for free to many countries. I copied the ingredients from the leaflets because apothealth doesn't include them , but other pharmacies do

There is the standard panpharma hydroxo that many of us use apohealth.de/en/products/pa... Active ingredients 1 mg Hydroxocobalamin acetate. Ingredients: Water for injection, Acetic acid for pH adjustment, Sodium chloride, Sodium acetate

or the cyano form you could try apohealth.de/en/products/pa... Active ingredients 1 mg cyanocobalamin . Ingredients: Water for injection, Acetic acid for pH adjustment, Sodium chloride, Sodium acetate

or the Pascoe hydroxo which is a higher dose 1.5mg in 1mL, apohealth.de/en/products/pa... The active substance is: 1 ampoule of 1 ml solution for injection contains: Hydroxocobalamin acetate 1500 μg. The other ingredients are: Sodium chloride, water for injection.

or Pascoe cyano apohealth.de/en/products/pa... Active ingredients 1 mg Cyanocobalamin . The other ingredients are: water for injection, Sodium chloride.

[brenanddave in reply to jade_s]

Thank you for allof that info Jade That was really lovely of you to put that together for me I will have a check what the ingredients are in the ones I have x

[Hockey_player]

What is a "cofactor"? I have problems with I take niacin: I get a niacin flush that looks like a rash. It is a common side effect of niacin. Most people here report very high levels of B12 when supplementing. I think that having it too high is not a problem since we know why it is high. It is a bit surprising to me that you are very low even when supplementing.

[brenanddave]

Hi everyone! Just to let you know..Having not SI for 4 days after my rash, yesterday I had 1 b12 injection. No rash yesterday! and none again today.. I'm not pushing it. I will wait until tomorrow for my next one and then start with folic acid again in case that is the culprate. I am hoping it was a covid rash as it appeared after 2weeks from testing positive. Wish me luck lol Thank you again for your kind support through all this xxxx

[jade_s in reply to brenanddave]

Great news!! 🥳🥳 Very happy for you & wishing you luck! 🙏

[brenanddave in reply to jade_s]

Thank you Jade, It is such a relief! I think my doctor was going to try to use that to stop my self injecting. They don't need any ammunition lol

[CroquetQueen]

Hi BrendandDave, Last year I also suffered from extensive hives and it was thought I had a Vit b12 Allergy/ Cobalt allergy. I have come out of it OK and will happily fill you in you my experience when I'm up to it after hosting a funeral next week and then undergoing cancer surgery. Please feel free to send me a private message and I will give you all the information I have and tell you what I can about my journey over the last 12 months as soon as I'm well enough to do so.

[brenanddave in reply to CroquetQueen]

Thank you CroquetQueen!I wish you a speedy recovery from your surgery and the very best possible outcome I am sending you strength to deal with your funeral hosting next week That is a lot for anybody I am happy to tell you that after steroids and antihistamines, my rash disappeared and after slowly starting back on b12 inj and co-factors, I believe it was a COVID rash It has not come back touch wood! xxx Big hugs from NZ