I'm new here - does anyone else take sublingual B12 tablets as a treatment for PA?

[WildflowerCarole]

I had a nasty reaction to B12 injection recently and have opted to take Hydroxocobalamin 1mg per day under doctor observation (although GP only wanted to prescribe 50mcg pd). I have started the tablets but am a little nervous about passing my B12 injection date and whether my health will deteriorate without the injection. Does anyone else choose to take this form of treatment for PA. I would be pleased to hear from you and your experience with the tablets. With thanks.

[fbirder]

Tried them. They did nothing.

[Hidden]

Hi Carole what kind of nasty reaction did you have to the injection as it’s not something we hear much of on here,well I’ve not anyway.

If it was a reaction to a hydroxocolbalamin injection I’d be interested to know why he would then prescribe the same drug in tablet form?

[JanD236]

I’ve tried them and unfortunately they didn’t help. I usually have 2 injections a week and I decided to stretch it out to once a week with sublinguals in between.

I only lasted a few weeks and it took quite a few more of twice weekly injections for me to feel ok again.

[Nackapan]

2 injectons ago I had some sort of reaction and was very poorly for 4 days. Ove had over 70 and had 3 since which have been fine .

What sort of reaction did you have.?

I've tried sublinguals high disr prak tablets Gps 50mcg taken throughout the day.

I need injections. I've not got a PA diagnosis

[Gambit62 Administrator]

I find high dose oral useful - allows me to combine different forms of cobalalmin as I find they help with different symtpoms. I have also found nasal sprays very effective - and my initial recovery was due to frequent use of nasal sprays rather than injections which helped for a short time but it was the first time I experienced a sustained recovery. Went from struggling to walk to being able to perch at the top of a ladder and prune a grape vine in a couple of weeks - and after a couple of months permanent depression stopped (something I had thought wasn't related to B12)

I still take injections though and notice the energy boost best with injections - though it is very short lived for me.

[SAM2608 in reply to Gambit62]

Please could I ask which nasal spray you use - I want to see if I can encourage my daughter to try one. Thank you

[Gambit62 Administrator in reply to SAM2608]

I wouldn't advise any high dose unless you know that your daughter has an absorption problem.

Unfortunately the brand I tended to use - YULIV no longer appears to be available, though there are alternatives (nasal drops) available from suppliers. The one I use is called detoxpeople.

[SAM2608 in reply to Gambit62]

Thank you Gambit. She is currently on monthly injections after finding her b12 level was 97 back in August. She probably needs more frequent injections but don’t think our GP will go above monthly at the moment. We still don’t know what the root cause is - intrinsic factor came back as normal though appreciate unreliability of test.

[PAS-admin Partner]

I use sublinguals as treatment. Also, like gambit, found the nose spray effective.The problem with all alternatives there is no quality control on them and it can be a bit of a hit-and-miss which one works. And as you can read, they do not work for everyone. Just monitor your symptoms and if neuro-symptoms start to appear call your doctor. What kind of reaction did you get and after how long of injecting?

[Sleepybunny]

Hi,

Oral b12 has little impact on my symptoms. I do take it between injections sometimes but injections have the best effect for me. I do not have a PA diagnosis.

I have not met anyone who managed totally on oral tablets.

I'd be interested to know what your bad reaction was.

Next link mentions potential side effects of hydroxycobalamin injections.

BNF

bnf.nice.org.uk/drug/hydrox...

Many on forum mention that symptoms get worst before they get better . This happened to me eg increased tingling, pins and needles and pain. A doctor I spoke to suggested it was the nerves "waking up" .

I kept going with the injections and eventually saw improvement in my symptoms.

There have been UK forum members who are on cyanocobalamin injections due to a previous bad reaction to hydroxycobalamin. It is unusual in UK to be on cyanocobalamin injections.

Cyanocobalamin is commonly used in US.

There are some who use methycobalamin injections. NHS does not prescribe this in UK but may be available privately.

There is also another form of B12 called adenosylcobalamin.

I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

Next link is to a thread where I left a detailed reply on how pandemic is impacting on B12 treatment in UK.

healthunlocked.com/pasoc/po...

Latest blog post on campaign to get B12 injections available over the counter in UK

b12deficiency.info/blog/202...

I am not medically trained.