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?
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Twinsgrandad
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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.
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 .
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.
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.
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'.
"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.
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.
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.
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