When should I start to reduce B12 injections?

When should I start to reduce B12 injections? I get shot once a week and take sublingual every day except injection day. Is there some kind of guideline I should follow since I am showing some improvements? Not at all back to myself but feeling some improvements. Thank GOD

[Nackapan]

I would carry on with your regime. Ivd stayed on weekly b12 injections for ovef a year . I was on 2 weekly for over year aftef s prolonged loading regime .

I've still a long way to go.

I still 'revisits symptons have big set backs.

Still waiting for a level of functioning doable.

So if you are doing okay .

Don't change a thing.

There are no guidelines

We all at some stage we all think less frequent better .

Thars what we are told.

Have what you need to keep well

When I was on 2 weekly I stopped making any progress at all so here I am unbelievably a yesr on 'trying weekly.

[Hidden in reply to Nackapan]

I'm sorry you still revisit symptoms and have set backs. It's just so strange how I can feel normal and then out the blue comes symptoms. I wish the best for you Nackapan. We're going to beat this you know.

Thank you for reaching out answering my question.

[deniseinmilden]

Only if you have no problems should you consider reducing your B12 supplements.

Any deficiency can cause long term damage which takes a long time at optimum levels to heal.

There is no problem in staying on the level you are at forever if you need it.

You may well get a benefit from taking a broad spectrum multivitamin and mineral supplement each day too - basic supermarket A-Z ones are as good as, if not better than, more expensive branded ones.

[Hidden in reply to deniseinmilden]

Thanks for reaching out deniseinmilden. Best

[Cherylclaire Forum Support]

We are all different.Try not to cave in under pressure- this can come from nurses, GPs, consultants who may be anxious about frequency, yet sometimes far less so about undertreatment -as reading any day's posts will tell you.

You are the only one who knows whether you are at a stage that you would like to maintain or whether you want to carry on trying for more improvements. Even the most oblivious of us has learnt to understand our bodies better.

(Who needed to monitor anything when well ?)

No-one wants to give up on their old self - makes you feel like a traitor - and hope hard to let go of. What is left afterwards ?

Keep going until you retrieve everything you can - and if that requires maintaining the current frequency, do that. As Denise has said "only if you have no problems..."

No matter what you decide, never try reducing frequency in order to prove experts wrong by deteriorating. It can lead to permanent damage that still may not be recognised as part of the original problem:

"B12 deficiency ? Well, just how bad can that be ? Must be something way more serious. And besides, you have more B12 now than I do ! No, let's look elsewhere ...."

Glad to hear that you are improving. That should give you guidance that you are doing the right thing. Sometimes takes so long that you forget how bad it once was - one good reason to monitor your condition.

There may be something to be gained by going to see consultants and having further tests, if only to eliminate more alternatives - but that list can be long and tests can be flawed or inconclusive. Keep doing the things that make you well and good luck.

[Hidden in reply to Cherylclaire]

Thanks Cherylclair. You are so right about not taking a chance and going back to the way I use to feel. Take care. Best

[deniseinmilden in reply to Cherylclaire]

So wonderfully well put! I'll hold onto those words to try to clarify what I want to say sometimes. I'm sorry I was a bit blunt earlier - I was feeling terrible but have improved again since! xx

[Cherylclaire Forum Support in reply to deniseinmilden]

Not blunt at all. You are absolutely right - "no problems" ! Keep remembering that - so easy to think "I'd be able to cope with the rest, if I could only have my memory/job/personality/sex-life/teeth/hair/sense of humour back" !(circle above as applicable)

[deniseinmilden in reply to Cherylclaire]

I so know what you mean! My loop encircles all those things too - although my hair is not too thin these days. Today I'm really missing the comfort of living with a long term partner, especially having someone special to cuddle up to at night.

However....

It's not all bad having a dodgy memory: I was disgruntled earlier because I didn't feel like I'd done anything useful today (coz I felt so rough) so I made an extra effort to make sure I'd at least achieved something outside before I came in tonight. I knew I'd be really unhappy if I didn't.

So, slightly happier that I'd at least done something I came in to discover that someone had washed up, put things away and put the recycling out! How good was that?!?!

I know the cats are clever, but....

(I live on my own because I can't cope with having to inflict myself on anyone these days - it's just easier).

What a nice surprise! (I still don't remember doing it 😂).

"Oh well" I thought, "that's great - that means I'll have enough energy to hang my washing up!" - only to discover that either someone had stolen it out of my machine or earlier I'd done a lot more than I thought!! 😂

I'm dead chuffed coz it meant I've got clean bedsheets tonight now too coz I wasn't going to waste a drop of that spare energy!

Sometimes I forget I've vacuumed too - that's another nice surprise to come home to!

[Hidden in reply to Cherylclaire]

Awe.... Cherylclaire, you hurt my heart because I know first hand what you mean when you say you want your memory, personality and humor back. I believe GOD will give us back our laughter, our personality and everything else this Pernicious stole from us! It's gonna get better.

[Hidden in reply to Hidden]

Cherylclaire and deniseinmilden. Better days ahead

[PhilAB]

Have you got a diagnosis of PA?

[Hidden in reply to PhilAB]

Yes

[PhilAB]

Well, once a week is not enough with PA. NICE guidelines and other experts say daily or EOD.

You also need to look at your diet, no alcohol, gluten free, organic and diary free would be beneficial.

Folate, and potassium rich food also useful.

[Hidden in reply to PhilAB]

Thanks PhilAB, this might be way too much information BUT just taking the shot once a week and the sublingual tabs every day except shot day gives diarrhea and stomachache. As a result of Pernicious my gastrologist diagnosed me with atrophic gastritis. Take care.

[Hamayeshguy in reply to PhilAB]

seriously gluten free and dairy free!I didn't know that. What happens if we have gluten and dairy in our diet? Maybe its just because of histamine liberation is ditched out of diet.

[PhilAB in reply to Hamayeshguy]

With PA we have bad gut acid. Even though I came back negative for celiac and other intolerance I.e. diary my research led me to see gluten can have negative effect on our gut. So, I ditched it alo g with diary which is no good for us anyway. I replace diary with coconut products. With a b12d and PA we need to do everything we can to heal. Therefore we should be prepared to alter our diet. I also have a megahome water distiller as you won't believe the crap in out water. I only drink distilled water, coconut water and coconut milk.

[Hidden in reply to PhilAB]

I do ok with my diet I eat pretty clean. I try to eat a protein and a vegetable for my meals and in between I eat natural yogurt. Doc said it would be good for the gut. I noticed a while ago sugar sets my PA symptoms off. But thinking about what you just suggested, I'm going to give up dairy for a month to see if it makes a difference with me. It's definitely worth a try. Thank you so much. 😊

[PhilAB in reply to Hidden]

Whilst natural yogurt is good, a good quality collagen powder would do wonders and repair you gut as well as skins, hair and nails. For me, going gluten free is more important than diary. Lots of alternatives, for example, oat, hemo coconut etc.

Koko yogurt can replace your yogurt as well. Organic blueberries with some organic honey is a lovely treat.

You may experiment with certain vegetables as well as some can disagree with you. I tend to mainly have organic sweet potatoes, organic kale (crispy seaweed), peas, tomatoes, brocoli and cauliflower.

Organic meat can be expensive, especially steaks. But, Coombe organic farm do really good chicken wings usually £5.15 for a kilo. And they can last a few days.

Rice is also gluten free so I eat rice with organic peas and chicken for my dinner most days.

Remember if you inject more frequently you do need some sugar, but good quality coconut water should see to that.

[Hamayeshguy in reply to PhilAB]

But be careful with coconut transfat

[PhilAB]

B12 will help heal the gut so I struggle to see why more will make it worse. It will be better to put more in, the sublingual won't be absorbed at all. It will just turn your urine green. I had a terrible stomach for over ten years, tested for IBS and other intolerance. All came back negative. Since I started b12 and changed my diet I never get IBS or diarrhoea, strange that 🤔

[Hidden in reply to PhilAB]

PhilAB you just don't know how you took some worry off me as to why that was happening. Gastrologist wants to have lower GI now. Had a upper GI already. Came back ok. Thank you for sharing. Best