Sore mouth: I’ve been having B1... - Pernicious Anaemi...

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Sore mouth

10 Replies

I’ve been having B12 injections every 2 weeks I’m now on my fourth, I’ve found a real improvement in most of my symptoms but still have burning feet and a really sore tongue and mouth, will this eventually improve?

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10 Replies
Nackapan profile image
Nackapan

You are early days in your treatment. Just keep going.It takes time fir healing and not in a linear line

We are all led to believe a few b12 injections wil cure all.

I was told I'd be skipping down the road.

The sooner the treatment ,the milder the initial symptoms the better outcomes to heal quicker .

in reply to Nackapan

Thank you x

Cherylclaire profile image
CherylclaireForum Support

If you have angular cheilitis (sore red skin that splits and bleeds at corners of mouth) then nipple cream can help. Apply once in the morning, once at night using a little in one go from a spoon to stop reinfection from the tube/pot. This advice came from an Oral Medicine consultant and really worked well for me. I very rarely get this now after having it on and off for over a decade.

He is now working on what to do about my burning tongue - another symptom that I could not get rid of with B12 injections. I will let you know what happens.

Luckily, most people do get rid of these symptoms, but for some it can take a while. Glad you are getting injections every two weeks. Did you get a loading dose of 6 injections first ?

Unlikely you are in UK - hazarding a guess at Cyprus ! Not sure of the treatment regime there.

in reply to Cherylclaire

Hi Cherylclaire thanks for replying , I don’t have cheilitis it’s just a really sore burning tongue and tender inside my mouth making it difficult to eat certain foods. I am in the UK (but wish I was in Cyprus! 😀) and have my B12 at a private clinic as my levels were 370 deemed too high for them from my GP who insisted it definitely wasn’t B12 deficiency I have been having loading doses every 2 weeks and am on my 4th now, she seems to think I will then only need them every couple of months after that but I will see! X

Emmers5 profile image
Emmers5

Do you mean one injection every two weeks? I'm pretty sure that loading doses are more frequent than that so it might take awhile to feel better. It does take time and sometimes feels like one gets worse before feeling better so don't despair. Good luck!

in reply to Emmers5

Thks for replying, I had One injection every two weeks, 4 in all, then will top up when needed.

Emmers5 profile image
Emmers5 in reply to

Check the guidelines for loading doses protocol. That just doesn't seem like much and I didn't have proper loading doses (I had neuro symptoms so should have had much more) and I believe that is one reason it took me such a long time to get relief. This site has lots of information and you should be able to find it here.

Cherylclaire profile image
CherylclaireForum Support

I just got a copy of the letter from Oral Medicine consultant to my GP about my sore tongue. He is thinking that it could be oral dysaesthesia (burning mouth syndrome- BMS)- so I looked it up (Googled) and found an interesting medical slide presentation.

"Burning Mouth Syndrome" -Marwan Ramadan, University of Mosul.

A primary diagnosis can only be arrived at via exclusion of all secondary causes, which include (among others):

B12/ folate/iron deficiencies

Autoimmune diseases

Salivary Gland disorders

Hormonal changes

It affects women disproportionately (7:1 ratio) and especially post menopausal women.

Strangely for a burning tongue problem that might not even have a cause, plenty of images also came up. You might find a tongue-twin there - and more importantly, a solution.

At the moment, my Oral medicine man is more concerned with what is stopping me being able to breathe through my nose effectively. Test: when closing off a nostril with gentle side pressure from a fingertip, breathe in: does your inhaling nostril start closing up ?

(Well- who knew ? Certainly not the two students in the room, who then proceeded to have a go).

So next step: nasendoscopy.

Burning feet -that'll probably be another "syndrome" heavily reliant on elimination tests.

I'm still going to call both of these B12 deficiency symptoms- unless proved wrong. You are likely to find that some symptoms take longer than others to go, some never quite go, some become rare and some you seem to get stuck with - but I'm still hopeful that I can ditch a few more, six years on.

in reply to Cherylclaire

Thanks that’s really interesting ! I have to admit to being a post menopausal woman! 🤣I am learning to live with the BMS and am hoping as you say it will be another symptom that disappears eventually! I have an appointment with my hygienist Friday so I will be discussing it with her as well.

Cherylclaire profile image
CherylclaireForum Support in reply to

As far as the Post-Menopausal Woman title goes....aren't we all ?Seems like a title for a painting.

So move over, Pre-Raphaelite Woman, here we come !

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