New kid on the block

[StephieT]

Hi guys, about 8 days ago I was diagnosed with pernicious anaemia by my new doctor. Intrinsic factor was negative and b12 level was 154. I've since had 3 intramuscular injections. I am now supposed to give myself 2 more this week, then 1/ week for 4 weeks. Then start monthly, then 3 monthly.

It's crazy how much better I feel after a b12 injection. I feel like I actually have some energy to get things done. Muscle soreness subsides, and peripheral tingling doesn't occur. The problem is that I only feel this way for about 48 hours after the injection.

I'm worried that when my injections become further apart I will be stuck with the same old symptoms.

This is the treatment plan she has in store for me. I was just wondering if anyone else has taken the initiative to buy their own without a prescription and dose themselves regularly?

[Gambit62 Administrator]

A lot of us supplement in various ways because we don't find that 'normal'` regime's work for us.

Understand your fears, but try and take it one step at a time.

Injections aren't the only option.

[Hidden]

Hi StephieT ,

Firstly welcome here, and I am sorry you are having to join this boat, but well treated PA is not to bad to live with. Your Dr seems very good and you are getting good treatment it seems to me.

Re:"buy their own without a prescription and dose themselves regularly", yes many do and as you self inject you will have no problems getting supplies should you need top. Fear not, see how you go , be patient, it takes time for the body to undo all the harm done without enough B12, that has taken years, it may take time to get that right. Look after your self now, give your body rest and eat well etc, it will all help,

Kind regards,

Marre.

[Blin in reply to Hidden]

Hi marre ! I Want to know how long time u can use another daily injection for damage neuro ! Like dizzines And back pains ! Now its 8 weeks ! I feel little better of fatigue And dizzines but still have brain fog , irritable ! So can i continúe my hidroxy injection o Make a test ?please help

[Hidden in reply to Blin]

Hi Blin,

In some other EU Country they recommend injecting every 3rd day hydroxocopbalamin (are you on hydroxocobalamin, methylcobalamin or cyanocobalamin?) for up to 2 years if you have neuro damage, so no harm continuing, if that is what you think you need. Its all a matter of trying what suits your body best, we all are different. But I'd first do as your Dr has prescribed, cause it will take time to repair all the damage done, that process may well make you tired and not well initially, the body has a lot to do now, it will need rest and so good care initially.

Just injecting more B12 may no be what you need, the weekly may well be fine, its also important to keep an eye out for other deficiencies developing whilst you start B12 treatment such as folate and or iron, B6, is all are needed in good supply for renewed blood production, so taking a good multi vitamin may well be helpful to make sure all is in good supply and you do not create a big in-balance by giving loads of one vitamin and not enough of the other. Many (B) vitamins need each other to be metabolised in forms the body uses so getting loads of one and not the other will mean the one is just not being used as should say.

I hope this helps you, I'd always first do what your Dr says, you can always decide to add more when you think its not the right treatment for you,

Kind regards,.

Marre.

[Sukiwarrior]

Hello Stephie,

Hi Carly's,

I am also new to all this I have had 8 out of 9 loading injections as I convinced my GP to give me 3 more. I have so many symptoms and I now believe I have been B12 deficient for many years. I have been on antidepressants on and off for 20 years when I believe it was all down to B 12. After my first few I still felt awful but my energy is now getting better. I went a a meeting last Saturday run by Martyn from the Pernacious Anemia org and it was fantastic in London I found out so much info.

I have decided to start self injecting I have got my B12 Methylcobalmin and just waiting for my insulin needles and then I shall continue every other day until I feel a difference.

You can not rely on your doctor as they have not got a clue so you have to take your health into your own hands.

Best of luck,

Bee.

[gillsie in reply to Sukiwarrior]

Hi bee where are you getting the methylcobalamin and what will you injction regime be? Is it expensive?

I am supplementing with boost spray and losenges only. Thanks