So I'm having my 2 weeks loading injections (6 injections) for pernicious anaemia at the GP I had no relief of symptoms until yesterday my 4th injection I had it at 4pm and by 8 that night I was absolutely wired all my symptoms went off for the first time in 3 years ( I have multiple spinal lesions and all that comes with it) until this morning and they are all back again but I was amazed ans see that recovery is possible, However I asked the nurse what happens after the loading doses and she informed me that I will have 3 monthly injections I explained the NICE guidelines which was like a red flag to a bull She said that absolutely I will not be allowed more frequent injections I insisted she messaged the GP which I know was rather pointless as she is just his mouthpeice She said the practice has a policy of not giving more the 1 injection every 3 months no matter what the circumstances I'm so tired and just feel too ill to start a fight with them I felt I had a glimpse of hope and now its been removed She was just horrible the way she spoke to me
feeling depressed and disheartened - Pernicious Anaemi...
feeling depressed and disheartened
I am sorry to hear your feeling so wretched, maybe you could contact the surgery manager pointing out the guidelines. Due to ongoing symptoms my Gp ( after a battle ) prescribed my injections 2 monthly !
Often when starting treatment we see an improvement then a decline as we start to heal so give it time. If Drs refuse to give more frequent injections despite our on going symptoms many take it upon themselves to self inject.
Be insistent.
Me too. I’m now on 8 weekly!
Yes , I’m afraid that many members on this forum can identify with what you have experienced . You haven’t finished your loading doses yet , but if you find , like most of us on this forum have , that we need more than the bog standard , one size fits all treatment, there is a way out . We have to self inject. Now this is not as awful as you think . Neither is it expensive. About £2.00 for an injection including the single useB12 ampoule. 2 needles and a syringe.I inject totally painlessly , once a week to keep well . But the necessary frequency varies from patient to patient . Anything from daily up,to 3 monthly
. We need to source the B12 from German online pharmacies , where B12 ampoules are not a prescription item like in the UK , but can be obtained from licensed pharmacies only . Needles and syringes from a U.K. medical supply company.
So with that knowledge , please relax , finish your loading doses and see how it goes . If you decide that you have to self inject , come back here for the information . Very best wishes .
The latest guide lines for diagnosis and treatment of b12 deficiency just published ( we are a bit disappointed in them , but they are better than the previous ones . )
Hi mully,
I am sorry to read. Sending a gentle hug. Good to hear that your symptoms resolved after 4th injection, albeit for a bit.
Unfortunately, even though the science (or evidence) supports more frequent injections. There is so much bureaucracy which the general public do not know about. This includes a GP stating publicly that he was fined for treating a patient with Hydroxycobalamin as they needed it. Another said they were fined for treating a patient who had neurological symptoms but their levels were just ‘in range’.
I live in a wonderful area where several years ago, they changed the B12 cut off from 190 mg/L to 130 mg/L. Why ? To save money. There are targets to achieve, budgets to stick to and statistics.
Mully, you have several conditions to juggle and many of us just do not bother to fight. This can be due to avoiding stress and worsening our health. It is entirely, your decision. We will support you either way.
Like Jillymo said we source our own supplies. Doctors are not trained in nutrition. I had one doctor telephone me, blubbering that he would prescribe ALL my vitamins, minerals and amino acids. Through gritted teeth, I politely declined. Although, I really wanted to give him the biggest ‘rollicking’ of his life. Fortunately, I rein it in pretty well.
Best wishes
hello mully, I know how upset you must be at the moment. To manage to get loading doses and then be told 3 monthly thereafter. Like having a lifeline taken away.
It has happened to many of us. The 3 months is like a mantra to them, but has no clinical basis. So, to avoid further deterioration I decided to self inject to receive the treatment I needed.
Best wishes x
So sorry to read your story, I have to say I am fed up with these health care staff treating patients like naughty school children.
As for new NICE guidelines it hasn't filtered through yet as I was at a registration appointment at my new surgery today and when discussing what bloods to do I suggested Active B12 as per new guidelines, on looking at computer there is no option to request an Active B12 test, well no surprise there. The assistant had no idea the guidelines had changed. So I will pay for my own again!!!!
Having to fight to get tests and treatment is just not on, no point in paying for a service you don't get!!.
Apologies, it makes me so annoyed people being left to feel ill.
I wish you all the best.
Hi,
I thought these links might be helpful.
How to write letters to GP about B12 deficiency
b12info.com/writing-to-your...
Point 1 is about under treatment of B12 deficiency with neuro symptoms present.
When you have time, have a look at the new NICE B12 deficiency guideline published March 6th 2024.
I have some reservations about the new guideline but there are some good bits.
If you have neuro symptoms, I would expect your GP to use the treatment pattern for those with neurological involvement. See section on Indications and Doses in link below.
bnf.nice.org.uk/drugs/hydro...
The pattern recommended for those with neuro symptoms is
A B12 loading injection every other day for as long as symptoms continue to get better (could be weeks even months of them) followed by a maintenance B12 injection every 2 months.
You could ask GP to find this pattern in their BNF book Chapter 9 Section 1.2
Have you thought about joining PAS (Pernicious Anaemia Society)?
pernicious-anaemia-society....
They can offer support and pass on useful info.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
PAS website has lots of useful leaflets you could print out if you join and a page for health professionals you could show to your GP.
pernicious-anaemia-society....
pernicious-anaemia-society....
Try to find the local B12 deficiency guidelines used by your ICB (Integrated care Board) in England (Health Board in Wales/Scotland).
"She said the practice has a policy of not giving more the 1 injection every 3 months"
If that happened to me I'd ask to see a written copy of the policy.
There's a lot more useful info I could pass to you.
Some links I post may have details that could be upsetting.
Just tell me on this thread if you'd like me to post more.
I'm not medically trained.
all I can say is she shouldn’t even be a nurse if she talks to you like that hope you get sorted soon
I doubt an injection every 3 months makes the slightest bit of difference. I couldn’t imagine going back to every other day now I do daily. Give up on the GPs and self inject, it’s far easier than you think and you don’t need to deal with their hassle and incompetence again. There’s no better feeling than actually being able to treat yourself and feeling the improvements!
The nurse does not decide on the frequency of your treatment.
What point is there to stopping a loading dose that has only just begun to make any difference to you ?
What use is a maintenance dose that fails to maintain any of the improvements made ?
Why have NICE bothered to write any guidelines for B12 if the only treatment pattern in existence is 6 loading injections followed by one maintenance injection every 3 months ?
How can that work for all of us ?
ALL GPs within the same practice do not treat their patients in the same way, nor do all nurses share the same attitude. This is a good thing as it gives you choices. You might have to work your way through a list but hopefully will find a reasonable GP who is willing to at least discuss the issues and take into account concerns regarding the multiple spinal lesions (demyelination of the nerve bundle in spine ???) before checking the guidelines and medical advice about treating those with existing nerve damage as there is a window of opportunity to repair nerves that requires a different regime from the one suggested. More frequent injections for a longer period, bearing in mind longevity of existing damage and likelihood of further damage if undertreated. S/he could consult a neurologist or refer you to one but start to treat you immediately.
For those with neurological damage, EOD injections until no more improvement can be gained. This is what is required. A maintenance regime should not be put in place until there is improvement that is worth maintaining, and an agreement that further improvement cannot be had. An effective maintenance dose for you might only be found by trial and error: for this, you will need an observant experienced and caring GP.
If you do find one, you will not have to worry about the nurses - the GP can allay any of their fears and they will be witness to what really effective treatment can achieve. Life is about learning.
sorry to add I also resorted to self injecting as my 8 weekly never hit the mark!
Hi everyone , sorry to jump on your thread, but I'm in the same boat, 3 monthly is really not enough but I can't seem to find any pharmacies ( even EU ones) that will provide it without a prescription.Could anyone pont me in the right direction please ?? All I've managed to find is a few kits on Etsy and I'm a bit dubious about that.
Loads and near all on amazon.de. . . . . Top of page change the flag to suit language. . . Prices are in euro's . . . . Dont buy mre than £135 upk as its liable to taxes. . . . . Wedgewood has a grand list of german sellers which I am sure he will share . . . . . . You are probably on 1000ug 1ml hydroxo. . . . . About the best and easiest just now seems to be pascoe 1500ug 1ml . . . . You can use all or use a 2/3 . . . . .
Thank you, much appreciated🙂. Now wondering if it's worth telling my GP ( if I get the hang of it!! ) They aren't much help these days 🙄
Hi Thank you all for your help and support just had another jab and the Nurse informed me Pernicious anemia does not cause spinal lesions !!!! ( It was up on the screen a message from my GP) I think any further discussion with the practice is pointless I've recently had an MRI and I'm waiting for the results so will have a follow up with the Neurologist and I will beg him for help He's generally very kind and supportive so hopefully I can persuade him to talk to the Dr on my behalf However even he is woefully uninformed about B12 I told him about the fact that sodium channel Blockers (that he prescribes regularly for TN and migraine ) block B12 absorbtion He said " Oh I didn't know that" Thank god hes kind Haha got something going for him Thanks again
Welcome to the club! That's one of the initiation trials. The next is they will take a blood test in 3 months to 'prove they have cured you', which they will delay if they know you have gone elsewhere for extra. Then they let a new Doctor tell you, "You don't have Pernicious Anemia! ". That it's the placebo effect/you need hrt/other gaslighting nonsense. DIY, or demand to see a haematologist.
With spinal lesions have you had a scan? With subacute degeneration of the spinal cord you should be on every other day injections for as long as.
Martyn Hooper's books are worth having.
On the whole with GP funding being as it is, I reckon they want as many of us to go private as possible.
Big hugs.
Don't let the .......get you down! Ask to urgently speak with someone familiar with the guidelines, if you ask enough people one of them might cave and treat you properly. If you get nowhere, report the practise.
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