Frequency of B12 injections - Pernicious Anaemi...

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Frequency of B12 injections

VickyB12
VickyB12
14 Replies

Hi to everybody.. has anybody been injecting B12 weekly ( twice or once) for a long time? My understanding is that it is ok if it alleviates the symptoms and I see it as a therapeutic treatment of my neurological symptoms. But I am starting to think that it could adversely affect my health in another way? I don't think it could be the case but I thought I'd better check. I think I am probably be alarmed because my mum was recently diagnosed with Jak2 gene mutation and polycytaraemia Vera ( a blood disorder). In the last few weeks I spaced them out but I feel like I need more. I do appreciate that everybody is different. I am only wondering if there are other people out there with similar experiences.

I am so grateful to you all guys because you have helped me so much in my B12 journey and gave me the strength to start self injecting. It has made such a big difference to the quality of my life. I think my husband is also grateful to you all as he got his wife back!

Thank you!

Have a nice day!

Vicky

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clivealive
clivealiveForum Support

Hi VickyB12 you certainly are not alone as many on here say the same sort of thing.

However, please monitor your Folate level as this and the B12 you are injecting helps your iron function properly and the three need to be kept in balance.

I'm not medically trained but have had P.A for over 45 years and get my B12 injections every three weeks

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VickyB12
VickyB12
in reply to clivealive

Thank you Clive. Thanks to the invaluable advice here, I take folic acid daily. Next month I will have an annual blood check up ( as I have Hashimoto's and I will also check vitamin D and iron)

You have been great helping me the past few months.... x

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fbirder

I've been injecting once or twice a week for 18 months. It's the only thing that keeps me operating at anything like a normal level.

In some parts of the world frequent injections aren't uncommon.

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VickyB12
VickyB12
in reply to fbirder

Oh..that's good to know... I thought I was over reacting and perhaps my mind was playing games ... I think I have heard it a few times from the GP and the neurologist that I probably started believing it!

Thank you fbirder x

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Jennylind

Different intervals seem to work for different people. I'm currently trying to work out what works for me, but some people inject daily with only positive effects. This is an old link, but I found it interesting: healthunlocked.com/pasoc/po...

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VickyB12
VickyB12
in reply to Jennylind

Thank you Jenny... great link - I bookmarked it for future reference x

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potter5

Hi Vicky, I have been having every other day injections since last September. I cut down to two each week from about March last year but have just gone back to 3 as I felt my symptoms were getting worse. My b12 level was 166 at June last year and my neurological symptoms severe. Some of my symptoms have eased somewhat e.g. palpitations, memory loss etc but the numbness, burning, cotton wool and tight banding symptoms in feet and ankles have never gone away but ease a little after each injection, then return. I also take a multi vitamin each week and folate 400 mcg same day as injection. I have also started taking magnesium for bone breaking leg cramps and spasms. When I saw a neurologist last September, he said it takes several years for the nerves to heal. I also believe it depends how long you have had the symptoms. We are all different in how we react and respond to b12. Some days I feel I am making progress, others I feel as bad as I did last year. All Iknow is, the only thing that may heal the nerves is b12. You will know when you need to inject. I hope you feel much improvement soon. Kind regards.

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kirsten555
kirsten555
in reply to potter5

I self inject every day at the moment, and have been doing so for about six weeks. Prior to that it was every other day. I'm finally feeling myself improve and am hopeful that soon I'll be back to normal. Then I may cut back to alternate days again. But everything I've read on the subject says that you can't get too much B12 - your body will simply excrete any that's not required. So the worst you're doing is wasting money. But if you can't store B12, have no stocks in your liver, and need it for repair of nerves and healing, then surely a daily dose is what's required? That's my logic anyway! Good luck!

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VickyB12
VickyB12
in reply to potter5

Thank you! it's great to know that other people feel the same as me... xx

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VickyB12
VickyB12
in reply to potter5

Thank you! Oh, I have seen improvement but I still have pins and needles - not even close to anything like what I experienced last year... and it feels as if the symptoms get worse when I get stressed. Could it be that we need more B12 when we get stressed? I have had the symptoms for about 6 months and then I got a 6x B12 loading dose, but the symptoms returned and then I had 20 injections when I was almost back to normal but the GP said I couldn't have anymore injections. Then, for 4 months I didn't have any and I was back to square one. I had a B12 test which was within range , 300 something? I suppose that after all these injections, my B12 should have been over the limit. That was when I decided I have no other option and I need to take control of my health.

Have a nice day x

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potter5
potter5
in reply to VickyB12

Hi Vicky, stress definitely makes symptoms worse as does tiredness, so rest is important. Good diet also important and inject when you know you need to. I hope you feel much better soon. Best wishes.

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potter5

Hi Kirsten, glad every day is improving your symptoms. How long were you injecting every other day, and did you not see improvement. I sometimes feel my nerves will not heal. Maybe left too long. What sometimes happens though, right after an injection the cotton wool feeling and banding lessens, I can wriggly my toes and my feet feel almost normal. However these feelings are short lived and within maybe minutes everything starts to build up. Not sure what that means. I know b12 is the only way to heal nerves. I hope you get much better soon.

Kind regards

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kirsten555
kirsten555
in reply to potter5

Hi Potter - I'm not sure exactly but think I was si alternate days for about 2 months or so. Initially, I could feel a good improvement, but then it slowed, and then I felt I was actually getting worse again. I think it's the old thing of things getting worse before they get better, which everyone talks about here. I haven't had all the physical pins and needles stuff, but have had mouth ulcers, hair loss, brittle nails, brain fog, memory loss, extreme exhaustion, weird little bruises all over for no reason, etc. But my worse symptoms, as I think we've discussed previously, were the psychological ones. Feelings of fear, anxiety, jitteriness, paranoia, confusion and depression. Luckily these have now virtually gone, as have the other physical symptoms. So I think the si every day is working its magic. Do you do it every day too? Good luck to you too! xxx

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potter5
potter5
in reply to kirsten555

Hi Kirsten, my psychological symptoms were also the first to go but the others remain. I haven't injected more than every other day and I cut down to two a week last March but have just gone back to every other day as my symptoms were flaring up. Hopefully I will feel improvement again. Really great that your symptoms are much better, yes, every day seems to be working for you. Hope you keep really well. Best wishes.

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