Cobalt allergy : I have had... - Pernicious Anaemi...

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Cobalt allergy

Yingtong22 profile image
23 Replies

I have had pernicious anaemia for at least 40 years.

My partner and I are now in our 80s.

After many years on lanasaprozole she now has B12 deficiency with a high MMA , with symptoms.

Our doctor prescribed Hydroxobalamin loading doses 2 months ago and her symptoms have begun to slowly recover.

The problem is that she now has an irritating rash in her hair , behind her ears and a few on her face which shows no sign of improvement.

All her life she has been allergic to zinc and nickel. Ie Elastoplast lotions and shampoos.

My question is how can she treat this deficiency without injecting cobalt.

We wonder if a longer gap between injections as on NICE recommendations might be tolerated

Her symptoms are wobbliness very sore blistering and numb toes and burning legs.

I see there has been correspondence on the problem over the years , but not offering solutions.

Is there any way we can resolve this problem.

I have wondered if at the time of the injection one might use antihistamines ora steroid to help prevent the reaction

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Yingtong22
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23 Replies
Nackapan profile image
Nackapan

I wonder if the rash looks like sore raised whiteheadsI had these in my hairline, on my face and neck.

They are s common side effect.

They do calm down .

Just kerl them dry.

Yingtong22 profile image
Yingtong22 in reply toNackapan

Thank you Nackapan. They are like little watery blisters with a pink area around. They irritate and have been there for about 6 weeks

I have lots of white bumps one my chin like small blind boils they have been there sometime I have got used to them

Gambit62 profile image
Gambit62Administrator

The issue is more likely to be microbes on the skin reacting to higher levels of B12 by secreting toxins that the skin is reacting to. A medicated wash may help. As Nackapan says it often calms down but for some it becomes a regular feature of treatment.

Some people find that high dose oral works for them but, if the problem is reaction microbes, this is unlikely to have an impact on the rash.

Wheat profile image
Wheat

Hello, I am sure you have looked at the Related Posts, so all I can suggest is you put Cobalt and in the top search bar, then search under Communities and My Community which brings up different posts. Hope this helps. Best wishes.

Maisal11 profile image
Maisal11

Did your partner have her homocysteine level tested? B12 deficiency can cause high homocysteine, in the beginning of treatment with injections the body rids itself of the homocysteine causing spots etc..

another possibility is that your partner is experiencing a worsening of symptoms which will calm down with continued injections..

the treatment is every other day injections with cofactors.. cofactors are 5mg folic acid, b complex with no more than 10mg b6, magnesium malate or glycinate and the rda of potassium through food..

has your partner had her vitamin d tested? Important to have a good level for our immunity and bone health

Hope you figure it out

bookish profile image
bookish in reply toMaisal11

I have reservations about a blanket recommendation of folic acid, particularly in high dose, and not discussing vitamer(s) in relation to B6 and B complex. We are not all the same, so these may not be optimal for all of us. Best wishes

Bellabab profile image
Bellabab in reply tobookish

High doses of B12 require folates to be high. I have searched and found no reason not to take 5 mg folic acid daily while injecting 1mg hydroxocobalamin EOD. Some panic based on a small uncontrolled trial has been roundly rejected now.

helvella profile image
helvella in reply toBellabab

I don't believe there is evidence that 5mg of folic acid should not be taken when injecting B12. That is, there is anything inherently wrong with taking the two together.

But there have been plenty of people who have reported feeling bad when doing so. Which suggests that it might be inappropriate for some people to do so because they do not tolerate that much folic acid.

Bellabab profile image
Bellabab in reply tohelvella

Indeed and of course reducing the dose may well be appropriate. 5mg EOD or cut in half EOD. Recently found its photo sensitive so must be kept in the dark.

bookish profile image
bookish in reply toBellabab

Sorry for the late reply, I am no longer receiving email notification for some reason. I'd agree that folate needs to be good, just not that folic is always the best way to achieve that. Methyltetrahydrofolate suits some of us very much better, so a lower dose of the right vitamer may get better effects than a higher dose of the 'wrong' form, with less chance of building up unmetabolised folic acid. The vitamer of B6 being important has been discussed here several times before.

Orchard33 profile image
Orchard33

Please consider coming off the PPI and changing to an H2 Blocker. I think the long term use of PPIs is causing serious health consequences in many people, particularly older people.

Yingtong22 profile image
Yingtong22 in reply toOrchard33

Thank you for your suggestion What is an H2 blocker?

Orchard33 profile image
Orchard33 in reply toYingtong22

I know that the principle and mechanism behind H2 Blockers is substantially different from PPIs, which, as someone on the forum said, is a destroyer of the stomach and gut biome.I know from personal, long-term experience that I had no discernible ill-effects on the H2B and only switched to Omeprazole because Ranitidine was found to have possible carcinogenic properties. The FDA withdrew it and we followed suit. My doc did not discuss the change, just did it anyway. Five years later after worsening digestive problems and being better informed, I asked to switch back. Now I only take the blockers when I need to which is hardly ever.

Technoid profile image
Technoid in reply toOrchard33

Some useful information on both PPIs and H2 Blockers here:

health.harvard.edu/diseases...

Orchard33 profile image
Orchard33 in reply toTechnoid

Thanks Technoid. Useful.

Cornwaller profile image
Cornwaller

Trialling a antihistamine tablet for a few days to see if it helps would seem a reasonable thing to consider - assuming that the antihistamine is well tolerated by your partner.

Best wishes

FlipperTD profile image
FlipperTD

Scientist, not medic.

One thing for certain, you can't separate Cobalt from B12, as it's an integral part of it. [Like Iron is, in haemoglobin]. However, it's tightly bound into the molecule. Worrying times, but good luck. As always, there's good advice on here from others who have faced similar issues.

wedgewood profile image
wedgewood

I can’t imagine that the skin problem is caused by a cobalt allergy . Cobalt is in so many food stuffs e.g.red meat , fish , nuts , green leafy vegetables , whole grains et.cetera . lol So it would have occurred before .

More likely it’s the effect of starting the B12 treatment . We often read about it on this forum . It usually goes away gradually . So it’s best to persist with treatment . Best wishes to you both .

palmier profile image
palmier

Perhaps a smaller dose would work. Apparently a higher percentage is retained from a smaller dose. Numbers I've seen is that on average 90 % is retained from a 100 mcg hydroxycobalamin injection, and 30 % of a 1000 mcg injection.

I don't know if having smaller doses more frequently would be any better from an allergy poing of view. Possibly, if there is a threshold under which here is no reaction. Also, I remember reading about a hyposensitisation treatment for cobalt allergy, where, as I understand, they start with an amount small enough to not cause a reaction, and gradually increase as tolerance (hopefully) increases.

About 100 years ago PA was treated with a liver diet. It was quite extreme, eating large amounts of liver daily. Without going that far, perhaps eating more liver means it could be possible to try a smaller maintenance dose of b12?

I remember reading a newspaper article about a man in UK with PA who had a bad reaction to b12. In the end he had to settle for a smaller dose than normal. So it is used as a solution sometimes. Still, b12 is very important so, as always, any negative effects of a treatment have to be balanced against the possible negative consequences of reducing the treatment.

Many people here have the opposite experience, that the recommended dose isn't enough. So I hesitate to give the impression of recommending using less than normal. On the other hand, if the reaction to the treatment is too bad it might be a necessary compromise in some cases.

Perhaps there are better solutions, like a (short term) steroid treatment like you suggested, as that seems to be a common treatment for metal allergies.

I hope you find a solution.

Rexz profile image
Rexz

Hi Yingting22, can you say how many years your partner has been on Lanasaprozole? Also why did they prescribe it? what symptom/condition were they trying to resolve.

Sleepybunny profile image
Sleepybunny

Hi,

Acne is a possible side effect of B12 injections but usually improves over time.

If you suspect an allergy to cobalt, has she seen a doctor who specialises in allergies?

I have read about some people with allergies undergoing a desensitisation treatment where they are gradually exposed to very small but increasing amounts of the allergen.

This requires a doctor/medical team who specialise in allergies due to risk of anaphylactic shock.

There's a lot of useful info about B12 deficiency in pinned post "Various B12D/PA resources".

CroquetQueen profile image
CroquetQueen

Hi Yingtong22, Last year I 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.

Yingtong22 profile image
Yingtong22 in reply toCroquetQueen

Thank you for offering your experience. I am sorry you are having such a hard time.

I send you my good wishes and hope that you will soon start to recover with good results from your surgery

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