Hi, I have just been diagnosed with PA, related to vitamin B12 deficiency. My GP has prescribed a course of vitamin B12 injections (12 over the next month followed by a quarterly booster).
I would be interested in hearing from you if you have had the course. Did it cure your Pernicious Anemia?
Pernicious anaemia is, strictly speaking, an auto-immune disease in which the body attacks and destroys the main mechanism that allows you to absorb B12 - so that doesn't get cured by B12 shots.B12 shots will cure the specific anaemia associated caused by B12 deficiency (macrocytosis), but macrocytosis isn't actually present in about 20% of patients with B12 deficiency when they are first diagnosed as B12 deficient.
B12 shots - if adequate for the individual (which may be much be needed much more frequently than standard frequencies) will cure the B12 deficiency associated with PA
PA does have other consequences - eg a slightly higher risk of NETS (pre-cancerous growths in the gut) which can then become cancerous because of higher levels of gastrin associated with the lower acidity levels that are another consequence of PA.
Thanks for your reply, very informative
No , Pernicious Anaemia is not curable and you will need injections for life. You will be able to lead a normal life as long as you can get injections at intervals which keep your symptoms at bay . This varies from patient to patient Best wishes .
I'm interested about the loading you are having.
What country are you in?
Quarterly maintenance rarely is adequate but see how you go.
Depends on severity of symptoms
How early caught.
A symptom diary csn be useful.
You will need injections for life
Hope folate . Iron ferritin and vitamin d were alsk checked.
B12 is treated before folate if found low.
Get a copy of your results stating your PA diagnosis.
For your own records.
Thank you for your reply. I’m in the UK. Thanks for your advice
Hi Twinsgrandad As others have said "No" there is no cure but if it is any consolation I was "given" two years to live back in 1992 when diagnosed with P.A. unless I either ate raw liver three times a day or have B12 injections.
I chose the injections and I'm still "clivealive" aged 80 after nearly fifty years.
I wish you well
Scientist, not medic, and history fanatic.
Clivealive has reminded us that back in 1992, he was 'given two years to live' without treatment. That's why it was called 'Pernicious Anaemia' back in the days before we had any treatment available. Nothing's really changed except that we now have very effective treatment. Untreated, we're still looking at a very grim outlook indeed. It's worth noting that the proposal to eat raw liver three times a day was simply using a high dose oral regime, as an awful but life-saving alternative to injections. This can now be done using tablets, but doesn't seem to work for everyone.
Clivealive's injections have kept him going 29 years so far, and counting. Well done!
A small correction FlipperTD the injections have "kept me going" for 49 years. I'm hoping to get an NHS Gold Medal next May 10th on the fiftieth anniversary of my first loading dose.
To be honest, I lived in complete ignorance of what P.A. was all about until I joined the P.A. Society and their then forum nearly ten years ago and started off with my very first question "Does anyone else "feel the need" for more frequent injections in the run up to their next one?" I was so relieved to find that I was "not alone" and then started the battle with my (then) "one size fits all" G.P.
Thanks for your kind words and I wish you well
Dear Sir
I am very, very happy to stand corrected. A minor finger fault and I knocked 20 years off! I for one would be delighted to contribute to your Gold Medal next May!
Best wishes, and as Winston Churchill would have closed with, 'KBO'.
Thank you so much for your reply. I agree that jabs are preferable to raw liver!
Hi,
PA is an auto- immune condition that requires life long treatment.
In some countries the term Pernicious Anaemia is used as a general term for B12 deficiency.
PAS article about difference between Vitamin B12 deficiency and Pernicious Anaemia
pernicious-anaemia-society....
"12 over the next month followed by a quarterly booster"
Do you have any neurological symptoms?
BNF (British National Formulary) link below suggests following treatment pattern for those with neuro symptoms...
A B12 loading injection every other day for as long as symptoms continue to improve then a maintenance B12 injection every 2 months.
There is no set limit as to how long the every other day loading injections can continue for those with neuro symptoms, could be weeks even months. If symptom improvement continues then so should the every other day injections.
For those WITHOUT neuro symptoms, BNF treatment pattern is
6 B12 loading injections over 2 weeks followed by a maintenance B12 injection every 2 to 3 months.
BNF hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
Vital to get adequate treatment.
Untreated or under treated B12 deficiency increases the chance of developing permanent neurological damage.
Some other B12 links that may be helpful....
Link about "What to do next" if B12 deficiency suspected or newly diagnosed
b12deficiency.info/what-to-...
Symptoms of B12 Deficiency
pernicious-anaemia-society....
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Symptoms of B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Have you considered joining and talking to PAS, who can offer support and pass on useful info?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has lots of useful leaflets/articles that some forum members pass on to GPs.
pernicious-anaemia-society....
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.
Link above has letter templates that people can base their own letters to GP on.
Keep copies of any letters sent or received.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/anaemia-b12...
cks.nice.org.uk/topics/anae...
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.
It's worth knowing what you are up against locally as some UK local guidelines on b12 deficiency differ from BSH, BNF and NICE CKS guidance.
Link below discusses treatment/diagnosis of B12 deficiency in an area of UK that has a poor reputation on this forum for how B12 deficiency is dealt with.
b12deficiency.info/blog/202...
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Films and videos about B12 deficiency and PA
PAS conference 2019
pernicious-anaemia-society....
Films about B12 deficiency
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.
Thank you for taking the time to make such a detailed reply. I will look at the links with great interest
How do I get tested for pernicious anemia?
B12 injections for pernicious anemia, only every 3 months
Pernicious Anemia - Self Injecting 
Pernicious Anemia Please Help!
Pernicious Anemia treatment
