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Pernicious Anaemia Society

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QUICK ONE FOR ALL US NEW MEMBERS ! ! !

BlueBoyMico profile image
16 Replies

Just saw the pinned posts to the right hand side of the home screen, the one on information about b12 deficiency from Stichting-b12-Tekort.

If you're taking ANY oral form of B12 you might want to bear their comments in mind.

While waiting for my overseas order and/or NHS, I've only been able to use the sub lingual spray, I'm kind of hanging on by a thread and once I get the shots started I doubt I'll be using the spray unless an absolute last resort.

healthunlocked.com/pasoc/po...

SOMEWHAT CONFUSING AS A WELL KNOWN MANUFACTURER OF SAID SPRAY USES THE FOLLOWING 'ENDORSEMENT'....

“Many members of the Pernicious Anaemia Society use the spray to keep their B12 levels topped up between injections, because the spray is so potent (one spray is equal to 12,000% of the recommended daily intake) and because it enters the bloodstream straight away!”

Martyn Hooper, Chair of the Pernicious Anaemia Society

C O M M E NT S ? ? ? ?

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BlueBoyMico profile image
BlueBoyMico
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16 Replies
fbirder profile image
fbirder

Sprays did absolutely nothing for me.

I'd much rather spray once a day than inject twice a week, if only it worked.

wedgewood profile image
wedgewood in reply tofbirder

Like fbirder ,spraying did nothing for me ,neither did sublingual lozenges . But as we are all different , I can’t dismiss it out of hand .I have to inject I.M. to get benefit . Wish we had a dedicated B12 research group like the Stichting B12 Tekort in Holland .

Sleepybunny profile image
Sleepybunny

Hi,

Although I use sprays occasionally and sublingual lozenges sometimes, I seem to get the best effects from jabs.

calbous profile image
calbous

I have always used tablets and sublinguals and they work fine for me so I think they have it wrong.

BlueBoyMico profile image
BlueBoyMico in reply tocalbous

But.... if you have never used injections for any considerable period, you have nothing to compare to and so how would you know if you are getting the best therapy?

calbous profile image
calbous in reply toBlueBoyMico

I was diagnosed with b12 deficiency about 7 months ago I think it was caused by taking lansoprazole for 4 years. Prescribed tablets that I will continue to take, noticed slight improvement after 10days and all symptoms slowly gone after about 5 months ,don't know if it would have been quicker with injections. Found some articles on this link interesting.yourhealthbase.com/vitamin_...

BlueBoyMico profile image
BlueBoyMico in reply tocalbous

Really good to know that calbous, what were the tablets you refer to out of interest? Where they vitamin-based supplements or something prescribed?

calbous profile image
calbous in reply toBlueBoyMico

I live in Spain and was prescribed by the doctor 500 mcg b12 every other day, after 3 months and a lot of research I upped it to 500 mcg everyday, my last blood test came back within range but on the low side so I am now tacking 1000 mcg b12 these are made by Solgar and I see they are available on amazon in the UK. I know everybody is not the same but it seems to work for me. Another link healthunlocked.com/api/redi...

BlueBoyMico profile image
BlueBoyMico in reply tocalbous

Ah right so you at least can get what you want over the counter, a real privilege!!!!

This is really encouraging for me knowing you're ahead of me on the 'living without PPI's' train lol

Thanks for giving me more hope, please keep me up to date here, on this thread??

Now get back out into that lovely sunshine lol

Miss-guineapig profile image
Miss-guineapig in reply tocalbous

I get my injection s every ten weeks as prescribed by GP, but also take 1000mg tablets 2-3 times a week, as I want to keep my stores high. I feel very well, so won't change a thing. I do stop the tablets before a blood test just so I don't mislead the test. My GP is aware of what I do and my blood test always shows good readings for VitB12 but I won't reduce anything...when you feel well, you want to keep that feeling. X

wedgewood profile image
wedgewood in reply tocalbous

If you had B12 deficiency because of taking lansoprazole , that is quite different to having B12 deficiency because of having Pernicious Anaemia . P.A. patients lack Intrinsic Factor and also stomach acid because of anti-body attack on their pareital cells . This cannot be rectified ,and will stay with them for life . By taking lansoprazole , you neutralised your stomach acid which is necessary for 12 absorbtion ..By stopping taking lansoprazole and taking B12 tablets , you rectified the situation . Quite a different kettle of fish to having B12 deficiency because of having P.A. Yes, tablets would work for you , but slower than if you had injections , which is the the most efficacious way of taking B12.

Miss-guineapig profile image
Miss-guineapig in reply towedgewood

I have PA, I believe due to taking very high doses of omeprazole for another health reason. It damaged my paritial cells in my stomach but I have a clear diagnosis. I was so ill, typical neurological and memory problems, combined with low folic acid, iron and VitB12. After loading doses and now injections every 10 weeks plus folic acid supplements (iron stopped now), I am so well by comparison and very lucky to have a great GP.

ACritical profile image
ACritical

Sprays are out for me as are the tablets, ascorbic acid added, it triggers a migraine. Not so with the injections, reduces them in frequency as in severity instead.

pitney profile image
pitney

I find the oral spray does help me a little but the effect doesn't last very long, I use it twice a day in between injections, I believe there is also a nasal spray now that some people find helpfull

JJ1314 profile image
JJ1314

Tried sprays, sub-lingual and patches, they did nothing for me.

BlueBoyMico profile image
BlueBoyMico in reply toJJ1314

You sure you didn't get foggy and spray your neck, put the patches under your tongue and the lozenges n your tea? lol I'm referring to the poor concentration We can suffer, sorry if that seems bad taste to anyone reading but a little humour helps from time to time I feel.

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