What is the reason for not injecting ... - Pernicious Anaemi...

Pernicious Anaemia Society

32,623 members23,984 posts

What is the reason for not injecting with the 2ml daily

birdsforme profile image
23 Replies

I am doing so much better on the day of my injection. The next day I start going downhill with symptoms. Pain in feet, balance issues and sleep issues. I have the ampoules from Amazon.de and I had read that 1ml of Hydro when it is in a 2ml solution that you cannot use this every day. I have been injecting every other day since Aug 4th. Much improved except the off day. Any advice?

Written by
birdsforme profile image
birdsforme
To view profiles and participate in discussions please or .
23 Replies
Polaris profile image
Polaris

Hi Birdsforme

Can’t answer your actual question but I’m wondering if the initial worsening of symptoms was to do with nerves waking up before then beginning to recover - something many of us have experienced early on the road to recovery.

I’d been injecting e.o. day for four years with 1 ml Rotexmedica Hydroxocobalamin. Since receiving the 2ml Hevert hydroxocobalamin ampules from Amazon de in July, whether it’s coincidence or not I don’t know but now find, for the first time, I can go a few days longer between injections and also seem to have more energy 🤗

Hope you continue to feel better 🤞

birdsforme profile image
birdsforme in reply toPolaris

Thank you for your reply. Those are the same ampules that I use. The ones from Amazon.de. It took me a while to see improvement but the second day after injecting is getting worse. I inject in the morning. Last night trying to sleep and feet were really bad. I will just keep injecting. Today will be a good day-injected this morning.

wedgewood profile image
wedgewood in reply tobirdsforme

You cannot overdose on B12 . Please don’t worry about it . Just continue injecting as often as you need to .

birdsforme profile image
birdsforme in reply towedgewood

Thank you so much for answering this. I will start tomorrow. Thanks for all the postings that you put out here!! It is very much appreciated!!

Jillymo profile image
Jillymo

I use the Hevert 2ml and inject daily.

If my symptoms get worse toward the end of the day where I am not able to sleep I inject with another.

Do what suits you and makes you feel better.

birdsforme profile image
birdsforme in reply toJillymo

Thank you so much for this advice. I really needed to hear from others on what they have experienced. I'm going to start tomorrow with daily injections. Thank you again and I am inspired by the all of the people on this site willing to help others.

B12life profile image
B12life in reply toJillymo

Jillymo, does this mean you are doing 2000 mcg (2mg)/ day? I've only been doing 1 / day and have been thinking I need to up the dose based on my exercising. It would be great to hear if that has worked for someone else; although I'm willing to take the risk.

Typically there is 1mcg of b12 per ml, but not sure about the Hervert version.

Jillymo profile image
Jillymo in reply toB12life

From my understanding the Hevert is still 2ml but I believe it is mixed with sayline but dont quote me. |So what I am saying is it is still only a 1ml dose. When my symptoms have been unbearable I have injected twice daily and rotate the injection site.

I have pharma 1ml and have used both makes in the same day. it simply depends on what I have available at the time. Yesterday I forgot my 2 monthly NHS injection was due, I had already given myself the Hevert when the nurse came out and gave me another shot !

I am still here to tell the tale amd although i'm not full of get up and go the awful stinging and burning in my legs has gone for now.

birdsforme profile image
birdsforme in reply toJillymo

Thank you Jillymo! Yes that is correct that it is only 1ml of B12 but the rest of the ml is a preservative. I guess that it's the volume of liquid that they are referring when they say not to do it daily. On my next order I will choose something with the B12 in 1ml. It seems to be a learning experience. I am glad you no longer have pain in your feet!!

B12life profile image
B12life in reply toJillymo

yes, i get the singing and burning when I get low. I think my extensive amount of exercise is bringing me low. so it is comforting to hear someone else is venturing out with the two shots per day. This makes me think though that there is something I am missing. Maybe I need more folate instead of more B12, meaning I should still do daily shots with cyano, but add more folate. it so hard to tell and so that is why I journal my journey here and will on my exercise thread as well. I love you all! You all are like family to me.

B12life profile image
B12life in reply toJillymo

Also, I found this:

superhumanstore.com/shg/sho...

I really want to try that! With the amount of exercise I like to do, seems like I need it.

Pickle500 profile image
Pickle500

The only danger of 2ml daily is that you overload the muscles with too much liquid.

For example, your arm deltoids aren't designed for 2ml, they can only take 1ml. Your thighs can probably handle 2ml, but not injected every day or even every other day in the same muscle.

If you are rotating your injection sites using 2ml you should be fine. It's not the dosage of B12 that's the problem, is the volume of liquid your muscles have to metabolise.

wedgewood profile image
wedgewood in reply toPickle500

That’s why I always use a1 ml ampoule -Panpharma which has 1mg b12 or Pascoe which has 1.5 b12 . Always in the Vastus Lateralis muscle of the thigh ,and alternating legs .

birdsforme profile image
birdsforme in reply toPickle500

Thank you so much. I do rotate the injection site and never in the arm. The next time I purchase I will buy just a 1 ml ampoule.

Narwhal10 profile image
Narwhal10

Good to hear that you are doing better birdsforme.

The most important things to remember are, we are all different. So, the frequency at which we need to inject will be different. You know your body and symptoms better than anyone like I know mine.

I have to inject daily, I use the 1 ml panpharma hydroxycobalamin but also use 2ml Helvert. It’s not something I like doing it’s a needs must.

Best wishes

birdsforme profile image
birdsforme in reply toNarwhal10

Yes I agree with you. Everyone is different and I think we know our bodies better than any Dr ever would. I don't necessarily enjoying injecting but love feeling better. Thank you for your kind words and I hope you are doing well!

Nackapan profile image
Nackapan

others on here inject daily

Its thr same dose of cobalamin /b12 just in more fluid !

Gambit62 profile image
Gambit62Administrator

the reason for not using higher doses is around the rate at which B12 is removed from your system - so it is about avoiding unnecessary wastage. It might be better to try for daily injections. There are some people who find they need to inject more than once a day. However, it would be better to get 1mg/1ml solution to avoid injecting larger amounts of fluid than necessary.

birdsforme profile image
birdsforme in reply toGambit62

Beginners mistake and did not realize that the dosage was in 2 ml until after the order was placed. I also live in the US so not all of the German sites will ship here. I have found another source for just 1 ml but will use what I have until then. I want to get to the point of just once a week if possible. Thank you for all the work you do!

TroyNZ profile image
TroyNZ

I have been injecting every day for 4 years with no ill effects.

As others have said - do what feels right for you

scnuke profile image
scnuke

I have 1 mg/ml hydroxo and have been injecting twice a day for months. Have not felt this good in years. Do what you need to do to feel better. All of my doctors know about my aggressive protocol and do not have a problem with it.

Runner623 profile image
Runner623

Birdsforme, this info may help.

I think I’ve discovered something useful to pass on. I’ve read every book on PA I could find and many articles that have been recommended on this site. I’ve dug deep into any information and have met with a variety of different doctors. I have a research background which has served me well.

My best advice came from my neurologist (I have MS and he knows me well). He said to listen to your body. No one can tell you how much B12 you need. Too little can cause neuropathy and TOO much can do the same.

I’m in the US, Arizona. I get my B12 from a compounding pharmacy with a clean room-FDA rules. My Natural Path writes my script. I started with the normal 2 week loading doses then once per month. It didn’t work at all …as many of you have posted about. I began following the UK protocol with injecting 1mg every day for up to a year or more until you don’t see any additional improvement. I used hydroxy.

It wasn’t making a huge difference. I remember reading how some bodies don’t methylate and should be using methlycobalamin. I made the switch, my neurologist confirmed that neuropathy, no matter your methylation ability, responds better to methlycobalamin.

It took 9 months of self injecting 5 days a week using methlycobalamin to feel better. Suddenly my feet started burning and were quite painful. I went to my neurologist thinking it was my MS. After an exam and many questions he suggested I was using TOO much B12 and to experiment.

I remember what my Natural Path had said months before to watch for pink urine after an injection. If the first urine after an injection is pink I could start lowering the injections. It was pink and had been for a month. Pink urine means your liver storage is full and you’re getting too much. I’ve mentioned this before on this forum and got my head handed to me but it is real.

I’ve finally found a hematologist who understands a lot of PA but not all and we are educating each other. He has confirmed the pink urine and that your liver stores B12. When the liver is full you will pee out what is not needed. As you all know B12 it water soluble. My hematologist was unaware that it could take a year or more to get feeling better and the liver to restore He did not push back when I was si 5 times per week.

Dropping to 4 si per week then 3. Each time my first urine after an injection was pink I’d drop again.

I’m currently at one injection a week and this week I’m trying to see if 10 days is good for me. I’d like to get to once or twice per month but I’ll see how it goes.

I’m still experimenting and learning but I have a hematologist who has an open mind and a neurologist who understands a bit about PA as well as Subacute Combined Degeneration.

More than a year ago I read a woman’s story on this site of her journey of well over a year of self injecting 1mg before she could drop down. She is the reason I decided to use the UK protocol. I’ve searched but I can’t find her posting. I’d like to know how she is now. Her post changed my life. I’m not great but I’m not sure anyone with PA will every be normal. I’m sooo much better than before.

May you find a solution that works for you. I hope this helps - even a little. Wishing you a healthy future,

birdsforme profile image
birdsforme in reply toRunner623

Thank you so much for reply!!! I will start keeping track of how soon I see pink in my urine. You gave a lot of good info. I would switch to Methyl version of B-12 but I am retired and do not have a lot of money. Have a healthy new year!!

Not what you're looking for?

You may also like...

Dilemma - what is the right direction?

Hi Guys Been self injecting EOD for almost 6 months now and so much better - it’s hard to believe....
Wwwdot profile image

Self injecting - what are the risks

Ok I'm finally having a serious think about self injecting but not going to lie the thought...
Clare184 profile image

What is the TREATMENT for PA? Not just B12 but what type b12 and how often?

Hello all and thank you in advance for your thoughts and comments. I was diagnosed with PA 3 months...
Cwilli profile image

What is wrong with me

Hi...I'm desperate for answers at the moment, as I'm in a really bad way with some really confusing...
Hayley31 profile image

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?

This site has been a tremendous help for me! I have been self- injecting 1ml of B12 subcutaneous...
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.