What is if any, the proper amount of ... - Pernicious Anaemi...

Pernicious Anaemia Society

32,669 members24,065 posts

What is if any, the proper amount of B12 to self inject. 1ml, once a week, 2ml, once a week or 0.5ml every day. Twice a day, 0.3ml, for PA?

RisingOne profile image
18 Replies

This site has been a tremendous help for me! I have been self- injecting 1ml of B12 subcutaneous once a week since, Nov. 8, 2022, there has been improvement. But, sometimes symptoms get worse, numbness in hands and arms, joint pain, tingling etc. All tests point to Pernicious Anemia, D levels, homocysteine levels in proper range.

Is there any proper amount to inject, once per week, once per month or every day, twice a day for real improvement (admittedly I am impatient, at 68 years young). Amounts vary a lot.

Is self-injecting, 2ml once a week, too much or twice a week, any help would be greatly appreciated. My GP, is not very knowledgeable about Pernicious Anemia, but learning.

I am injecting methylcobalamin as opposed to Cyanocobalamin which to me is a lesser form.

Finally, how long before I see improvement, my Pernicious Anemia was brought on by Dr. Prescribed, PPI’s, Antacids, for GERD about 2 years ago. I have stopped taking all antacids, PPI’s etc.

Thanking you all in advance for all your help.

Sincerely,

RisingOne

Written by
RisingOne profile image
RisingOne
To view profiles and participate in discussions please or .
Read more about...
18 Replies
Nackapan profile image
Nackapan

Do you mean you started Injectibg Nov. 2021?Have yoh z diagnosis oc PA or b12 deficiency.?

Are you getting any b12 injections prescribed. ?

Methylcobalabin can give horrid side effects to alot of people.

Some have tried all types

Hydroxcobalamin and cyanocobalamin are widely used stable and cheaper.

B12 is b12 when I asked s doctor about this.

You may be fine as you know thd cause of low b12 once yih find thd frequency that suits you.

PA is an autoimmune disorder.

The IFA test picks up about 50% of those with PA

As for dosage the 'norm. Ix 1mg/1ml

Thd frequency varies from person to person.

Thd aim is to pre empt symptoms returning

You can get worse before better.

If if was Nov. 2021 its very eary days.

At thst stage with severe neurological symptoms I was having every other day b12 hydroxcobalamin on thd NHS. BNF guidelines. Perhaps as your doctor about this?

Also other things ruled out like thyroid problems low fokate iron ect that Cs accompany PA.

Hope you find a way to get better

RisingOne profile image
RisingOne in reply toNackapan

Thanks again Nackapan for your help.

RisingOne profile image
RisingOne in reply toNackapan

Hi Nackapan, I was going over your old replies and found this one. I started injecting B12 Nov. 8, 2021, sorry about date mix up. After your excellent advice I now inject EOD 1ml methylcobalamin and cynocobalamin alternating, there is improvement just slow. Thank you for your help and guidance. GOD BLESS YOU…

Nackapan profile image
Nackapan in reply toRisingOne

Glad to hear slow improvements. Mine have been slow but happening

RisingOne profile image
RisingOne in reply toNackapan

Thanks ❤️👏👏

wedgewood profile image
wedgewood

I think that you can’t call your condition Pernicious Anaemia , since Pernicious Anaemia is caused by autoimmune antibodies that attack Parietal cells in the stomach . Those cells produce The intrinsic Factor , which together with stomach acid, enable the breakdown and absorption of Vitamin B12 . PPIs do a very efficient job of totally neutralising stomach acid , so that is why you were suffering from serious B12 deficiency . The very small amount of stomach acid that you had would not be sufficiently strong to cause the. Oesophageal sphincter to close properly , so you would have been suffering from GERD . I would think that after the injection of B12 have helped you so much , you might well be able to manage on B12 tablets . As you seem devoted to Methylcobalamin, you can obtain this in tablet form . You could give them a trial .

You cannot overdose on Vitamin B12 , so do not worry about that . It is not how many mls.you inject , because some ampoules very the. strength of the dose . It is the mcgs that are significant. Panpharma ampoules are 1 mcg. X 1ml

Hevert are 1mcg x 2 mls In other words. exactly the same dose . But these ampoules are Hydroxocobalamin, which are really excellent

You need to inject often enough to keep the improvement going . When you have reached that stage and there are no more improvements, inject often enough to keep other symptoms at bay . I hope that you have not sustained irreversible symptoms caused by too late treatment .

As you say you are injecting Methylcobalamin, are you using the powder , and hydrating it with saline , or are you using Arnika single use ampoules ?

It very good that your Homocysteine and vitamin D levels are within range .

Hope that this has helped a bit . Best wishes

RisingOne profile image
RisingOne in reply towedgewood

I am injecting Methylcobalamin, 2 ml ampoules from company here in states.

wedgewood profile image
wedgewood in reply toRisingOne

You don’t state the strength of the ampoules. 2 ml says nothing about the strength

Didn’t realise that you were in USA The PAS is a U.K. society , so most posts are from U.K. WELCOME ON BOARD.!

RisingOne profile image
RisingOne in reply towedgewood

Here in the states doesn’t state strength other than 2cc methylcobalamin ampoule. Thanks for the welcome! Great group!

Gambit62 profile image
Gambit62Administrator in reply toRisingOne

the container should tell you how much B12 is in the ampoule eg 2mg suspended in 2mL

mcg-woo profile image
mcg-woo

Hello! My b12 was tested because I had been taking PPI’s for extended amounts of time (years) over decades as my gastro symptoms began in my late 20’s. I was convinced that PPI’s were the cause of my low b12 and I was very symptomatic. So, I discontinued the use of PPI’s and discontinued injections, opting for 5000 mcg of sublingual methyl per day. I believed that I was cured having rid myself of the PPI.

After 3 months I was the sickest I’ve ever been in my life and could barely drive to see my doctor. Recovery from low b12 takes time. I have been on injections for about six years and I inject 1ml once weekly which keeps symptoms at bay for the most part—I have a slight symptom that creeps in now and again when I’m due for injection.

Best of luck!

RisingOne profile image
RisingOne in reply tomcg-woo

Thanks so much for your insight and experience.

PhilAB profile image
PhilAB

Treatment of B12 deficiency in people with neurologic involvement should include:Seeking urgent specialist advice from a haematologist.

If specialist advice is not immediately available, initially treating with hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then hydroxocobalamin 1 mg intramuscularly every 2 months should be considered.

The above is taken from the NICE guidelines - AT LEAST EVERY OTHER DAY!

--> I do daily and improvement has taken a long time but physically I am 48 years young and my body is like it was when i was 18. Muscles never ache!

--> Also, you need to take folate and check ferritin, whilst also increasing potassium in your diet.

--> I have also for last 20 months been on an organic, gluten and diary free diet.

Nackapan profile image
Nackapan in reply toPhilAB

Sounds like you are doing well.

We don't all get referrals to haematologist.

Also yet again knowledge us lacking in b1w def. /PA

Shouldn't be a lottery but I've found it us.

Same with neurologists.

I've seen three.

One wanted to stop b12 all together saying it was toxic

One had other theories but prescribed heavy drugs.

One told me to keep b12 levels up and inject at least 2 weekly

All very confusing 😕

PhilAB profile image
PhilAB

Sorry, I was just quoting NICE guidance about frequency of injections, I.e. daily as this frightens most. I never quoted with the intention of seeing a haematologist.Once a week injections will not allow healing as b12 only last 24 hours, thus daily injections are crucial.

Physically I am doing well however, my brain fog haunts me still, but small nerve fibres take at least two years to heal, so many more months and years to see if I heal completely. Also I will be probably on daily injections for rest of my life. I also still experience cognitive issues but my physical healing has been tremendous.

RisingOne profile image
RisingOne in reply toPhilAB

Thank you PhilAB, for your advice and help.

PhilAB profile image
PhilAB

I didn’t want to hear that I need to inject every day! I am the last person who my family would inject as I hate needles. But, from my research daily B12 injections are needed, I take both methyl and hydro b12 to give me best chance of healing. I have spent many hundreds of hours researching PA and what is best to do. It has become my obsession, I also have spent time educating myself about medicine, Terran theory and germ theory and how our current medical model is wrong, flawed and is doing more damage than good. I have altered my life, my diet and am doing everything I can to overcome my long term b12 which was a result of the of medical negligence and ignorance. Luckily for me I have a good educational background, my sister has two phds this is my researcher guru. I have also met a wonderful individual who has PA and we help each other.

scnuke profile image
scnuke

The volume of the ampoule (ml) means nothing without knowing the dose (mg or mcg) or concentration (mcg/ml) I would be very suspicious if the ampoule does not have this information. Most common in the USA is 1000 mcg/ml. Some ampoules have 500 mcg/ml. For safety's sake, you must draw and use all the liquid in an ampoule. You could draw 1ml each into two syringes and save one in the refrigerator to use by the next day at the latest. But again, without knowing the concentration, that would be advised for concentrations greater than 1000mcg/ml. Self injecting is a great way to take control of your situation, but you must learn all the rules for safety and sterility to make sure you are not injecting a contaminated or dose compromised product.

Not what you're looking for?

You may also like...

New to all of this Pernicious Anemia Confused about physical response?

I am new here and this is my first question ever in this group. I have pernicious anemia due to...
RisingOne profile image

B12 Patches

The forum has been a true blessing! More information than my GP! My question: Has anyone tried...
RisingOne profile image

B12 results

Hi everyone, I'm a newbie! I've had M.E. for 8 years and seem to get slightly worse and more tired...
_Jen_ profile image

Pernicious anemia/Iron/Thyroid problems?

Is it common for people with pernicious anemia to go on to develop thyroid problems? I have had...
Krealan profile image

Pain relief for Pernicious Anemia numbness etc.

Hello everyone, this is my 2nd question on this most helpful site! My question is as follows, I’am...
RisingOne profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.