Pernicious Anaemia Society
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B12 Injections :(

I'm new. I was "doagnosed" with pernicious anaemia two years ago and have been having B12 injections every 3 months since. They help but around a week before my next injection is due I'm like a sloth. I actually even stutter and and walk into things, forget things and am pretty much a chocolate teapot. Does anyone else get this and has anyone changed to 2 monthly and, if so, has it helped. Many thanks in advance for any tips x

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it can be very difficult to get a GP to vary the frequency of injections though the reality is you are far from alone. I've actually not come across many people who manage to get to 3 months without symptoms returning - just a very unusual one or two. When hydroxocobalamin was first introduced in the UK the injection frequency was 1 month, then it went to 2 months and then to 3 months - with the proviso that neurological symptoms should be treated with maintenance at 2 monthly. Nobody has been able to produce any scientific background for the changes so the suspicion is that it is penny pinching.

The fact that you are walking into things and stuttering suggest neurological involvement which would be an argument for two-monthly shots but, as I said at the start getting a GP to recognise this can be very difficult. Advice would be to gather your evidence before tackling your GP and probably to broach the subject in writing.

Evidence would be a record of symptoms and the BCSH guidelines which you can find here

onlinelibrary.wiley.com/doi...

but your GP can access them through the BNF

My symptoms start to return within 24 hours of a shot ... so go back to being the walking dead quite quickly.

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Thankyou - I'll start keeping a record of symptoms x

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Hey weecee45... many have simlar issues... its discussed alot on here... i tried to copy a prior post but to be honest my brain is mushy today and i just keep faili g... but if you look at my profilw on here most of it is me saying simlar stuff amd sayong how mpre regular b12 effected me and chanaged things

Sorry to hear you unewell .. In my case it did help sugnificantly... but everyones dodfrent and im no doctor... but have a look at my profile at last posts ive done and i go over my recent experince with b12 more regular i think, which may aliviate any worriws i do t know.. but theres loads of them on here and im sure someone more knolledagble and currentley alive will respond to you soon enough like gambit or clivealive who are fountins of knolledge i personally had no gp luck and tracelled for docs.

Appologies for shortnes sof response normally im a bit more in depth ... but i like the choclaaate teapot terminology it makes me smile...i do hope things improve for you soon, i found more treatment truly saved me (even if still recoovering now the doffrence still amazes me)

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And oh my appologies fir atrousious writing too

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Thankyou so much. I'll have a look x

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I do feel for you , and recognise what you are going through . I have been there . It is shocking how we are treated . I was laughed out of the surgery when I tried to get extra injections ( and even tonget a diagnosis had been an ordeal . I had to find a private GP to get tested ) Anyhow I just had to resort to self injection . It’s easy enough to get Hydroxocobalamin B12 ampoules from German online pharmacies . And all the other stuff , needles, syringes swabs etc from U.K. . I need to inject weekly to keep well . Buying in bulk (100 of everything ) means an injection only costs £1.00 . So you might consider this . Do try with your GP first though . You might be lucky . If not come back here and we will tell you how to gonabout it . Best wishes .

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Thankyou I will ask about 2 monthly x

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If you take your problem back to your GP it is possible (probable) that you will not receive a positive response. This has been my experienced and that of many people on this site. There is an issue of time. If you enter into a protracted battle with the medical profession you are seeing a chunk of your life slip away - where you are alive but not able to live it as you should. There is also the risk that damage will be done that is not reversible. The B12 test is unreliable and often gives false readings. Also serum levels are not always indicative of how much B12 is in your liver where it counts. Lastly there is strong impirical evidence that 3 monthly injections are inadequate in many cases.

If you cannot get your doctor to depart from these egregious guidlines and treat your symptoms instead of a test report, self medication may be your last and best option. If this is the case my advice would be not to delay. PA in NOT an inconsequential condiiton so do not hang about. It is your health that is at issue - not the doctors.

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Thankyou very much x

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Do you take folic acid / folate? Other minerals? Have you tried coconut oil?

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I was on prescribed folic acid tablets that they put on repeat prescription but then said I don't need them as my levels are high. I'm covered in bruises from the amount of botched blood tests "oh we've lost that vein, let's try another" x

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Im so sorry. ox please hang in there.

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Please consider looking into folic acid test reliability. Wish you the best. ox ..

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Do you mean you think it may be worth still taking the folic acid tablets? I'm happy to take anything to be able to walk the length of myself 😕 x

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Hi I have managed to get my jabs to 8 weekly but from reading the stories of many others I think I have been lucky. I went for a review meeting about 8 months after starting my jabs and explained that a large number of my symptoms go after a jab but creep back after 6 or 7 weeks. I now have jabs every 8 weeks I'm currently 6 1/2 weeks after my last jab and starting to feel the tiredness and itchy skin etc coming back, I'd like to have them every 6 weeks but think I might be pushing my luck. Definitely worth asking your gp and see what they say

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I'm definitely going to ask as I'm not due one now til 22nd May 😣. I got a different nurse who asked me if it was still every 12 weeks and that's why I questioned if it was an option. Thankyou x

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I have been very lucky with my GP as I am now on monthly jabs and have been for over a year. I had neuro symptoms but didn't get the correct initial treatment and then went onto 3 monthly injections- this was 8 years ago but i didn't know anything then just believed the doctors. Doc tried to get me back onto 3 monthly when i was on two monthly and she said daid see what happens but i said I know what happens, i start feeling sick 2 weks before the jab,so i was kept on 2 monthly. As i still not well she agreed monthly but I am worried when she retires soon as I've already had one doctor look quizzically at me for having monthly injections.

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Oh I hope you get to stay on the monthly ones. I only had my last one a month ago and I haven't noticed any difference. In November I was going to zumba at 8am and now I can hardly stay awake so it's definitely got worse over only 4 months. Two of my doctors retired too and it's mainly locums now who do look at you as if "I'm the doctor here. Do as I say". I'm sick and tired of being sick and tired 😐 x

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I read so much information but not very good at retaining it I my head. My current gp never minds if I go in with printouts; I think she's unusual. Thpugh she still doesn't know much about b12 or d. She admitted she didn't know much about D deficiency. Still don't know if i have PA as nurses say yes but doctor says no. It's an uphill battle.

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