Hi I was diagnosed with PA August 2016, injections were organised and have continued without fail until now. After my last injection in March I have noticed that the surgery have set up a repeat prescription of oral B12, obviously due to the virus things have changed. I have often referenced articles to understand any symptoms I have, that others are going through the same issues. My understanding of this is these tablets will be of no use to me, is there a process to follow to get the surgery to acknowledge this is not a “normal” B12 that can be controlled by ingesting a tablet that will not be absorbed by my stomach. There was a lot of posts back in 16 and 17 around this issue as a cost saving exercise is the virus just an excuse to get us to change in a time that could make us more vulnerable to infection David
Tablet instead of injection for PA - Pernicious Anaemi...
Tablet instead of injection for PA
Write to your doctor saying that you have Pernicious Anaemia and that the treatment is injections for life. Say that you are extremely worried about irreversible nerve damage. Suggest that they might follow the BMA guidance for GPs during the pandemic, that they consider teaching patients to inject at home. Otherwise insist on having the proper treatment - injections.
Send copies of the letter to your local MP, local press and local TV. Make sure you include those cc: on the letterhead.
Your reply is so much better than mine ! I’m afraid I just go into rant mode when I hear about the injustices that are going on . 👍
Thank you for the advice I will write to them and ask for this I assume they just go for the easy option when treating B12 and don’t consider what the deficiency of each patient is caused by. Run a report for all that have B12 and just prescribe rather oral medication rather than look at each case.
Thank you for the advice I will write to my Doctor and ask for this. My only assumption is that they have just applied a B12 filter to their patients and not looked at the underlying causes. The practice have been very good since my diagnosis, just hope this will continue now David
I contacted my GP as my injection was due (just B12 deficient not PA) and the receptionist said she needed to check with the GP as they were giving individual advice depending on the person.
The receptionist phoned the next day to say I needed to take at least 50mcg of cyanocobalamin daily which any pharmacist could advise me on.
So, I basically have to buy my own. It is the same with my vitamin D (deficient in that too). They gave me the loading dose but then I have to buy the daily dose I need myself.
My wife has B12 deficiency and was prescribed the cyanocobalmin as a replacement for injections, the pharmacist offered them over the counter as cheaper that way. They have caused nausea for my wife after taking these tablets we will see how they go for her
That’s interesting Mazza63 because I started taking them on Friday and this morning I’ve woken up a bit fuzzy headed and nauseous.
Hopefully side effect will stop when my body gets used to them.
Good luck to your wife. 😘
“ Due to the virus things have changed “ . Yes they have , but it should not have to the treatment of Pernicious Anaemia patients . They must have B12 injections FOR LIFE ! It is more than outrageous that injections have been stopped. The advantage for the perpetrators of this outrage, is that the “perniciousness” takes quite a long time to happen . It will not show seriously straightaway . Patients will only gradually become very ill , and eventually die. It can take years . But , in the meantime life for them becomes intolerable .
It is not called PERNICIOUS Anaemia for nothing . Deadly -fatal .
Thank you for replying, I agree wholeheartedly with your statement as I was probably suffering for quite a while and no one picked up the problem until rushed into a&e, and after being told that i was suffering with various serious diseases before they eventually identified PA. Once all the loading doses were complete I have been on 12 weekly injections since. David
Hi,
I copied the info below from a reply I left on another thread.
Have you considered joining PAS?
They should be able to pass on useful info. There are useful leaflets/articles that PAS members can access in library section on website.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members from other countries.
pernicious-anaemia-society....
There is a telephone helpline for PAS members to ring.
PAS support groups in UK
pernicious-anaemia-society....
Support meetings are cancelled during pandemic.
Have you also considered putting any concerns about treatment into a brief, polite letter to GP?
In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.
Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs
May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.
People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See Page 2.
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
Impact of Pandemic
Unfortunately this is an extremely hard time to argue for reinstatement of injections.
Many on forum have had B12 injection stopped/delayed or swapped for oral tablets during Covid crisis.
Many on this forum have been put in a situation where they have no alternative but to source their own supplies and self inject.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
From PAS website
pernicious-anaemia-society....
There are lots of comments under the posts as well.
From B12 Deficiency Info website
b12deficiency.info/blog/202...
Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.
b12deficiency.info/blog/202...
Most recent blog posts/news items about stopped injections
From 1st April
b12deficiency.info/blog/202...
PAS statement published 11th April
pernicious-anaemia-society....
Blog post about Covid crisis from B12 Deficiency Info from 18th April
b12deficiency.info/blog/202...
Blog post about e-mail campaign from B12 Deficiency Info from 19th April
b12deficiency.info/blog/202...
If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice for doctors to use during pandemic.
b-s-h.org.uk/about-us/news/...
Click on General Haematology tab in link above
then
Click on BSH Advice on Supplements tab
I feel that some of the details in the BSH advice are concerning, there is a recent thread on forum which discusses this.
I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.
At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.
WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Symptoms Diary
I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
I am not medically trained.
Thank you for the reply, I will write and explain with my Doctor and with all the information provided I feel that I have the necessary back up to my argument. Though I shouldn’t have to argue it should be a given with PA. David
I hope you get the treatment you need.
I genuinely think there will be pressure on GPs to move as many as possible permanently to oral tablets.
"Once all the loading doses were complete I have been on 12 weekly injections"
Do you have any neurological symptoms eg
tingling, numbness, pins and needles, burning sensations, insect crawling sensations, tinnitus, muscle twitches, muscle fasciculations (ripple like muscle movements, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, forgetfulness, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc?
Does your GP have a list of all your symptoms, especially any neurological ones?
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.
Link about PN
nhs.uk/conditions/periphera...
Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms
b12deficiency.info/b12-writ...
I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.
Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, requests for referrals and any other supportive evidence.
If you have neuro symptoms
1) Have you been referred to a neurologist?
2) Has your GP sought advice from a Haematologist? See link below.
NICE CKS
cks.nice.org.uk/anaemia-b12...
UK B12 treatment
1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
There is no set time limit on how long patients with neuro symptoms can have the every other day loading injections. If symptoms are still improving after two weeks of every other day injections then loading injections should continue.
How many loading injections did you get when first diagnosed?
You appear to have been put on the first pattern of treatment for those without neuro symptoms if you're having 12 weekly injections.
Both patterns of treatment allow for maintenance injections every 2 months.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed last year.
pernicious-anaemia-society....
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
There are more links to UK documents in the other thread I linked to at bottom of my first reply.
Your GP may not be aware of this.
Sadly the impact of Covid 19 is changing the way some GPs are treating B12 deficiency.
If you're not already a member of PAS, I suggest you consider joining so you have access to support.
PAS membership
There has been a change in guidelines:
See Sleepybunny 's latest post today.
It gives a link to the latest changes in the Haematology guidelines, from the Pernicious Anaemia Society. They had a recent meeting and are likely to have more.
Your treatment is protected because you have PA and no dietary cause to your condition.
Thanks just read the mail from PAS, I was fortunate to have my last injection mid March and was just wondering if others had been prescribed oral medication without any consultation as I had always been made aware that oral B12 is insufficient for PA sufferers in particular. the response from everyone as been great and I feel confident about approaching the practice armed with this information. It just shows how vulnerable we all are when there is an issue that affects the normal medical regime
I am in shielding at the moment and due a jab - I did ask whether I could change to tablet form, but was told that it would not be of any use to me due to having PA. However, I can defer my jabs for a few weeks on the understanding that if I feel unwell/fatiqued, then I must ring for an appointment.
To PA or not to PA
Subcutaneous injection 
New B12 Oral Treatment for PA
