New to pernious anemia

[sue_higgins54]

I was diagnosed with pernious anemia yesterday & would like any guidance on the treatment I should expect from the NHS.

[fbirder]

The NHS treatment regimens are detailed in the British National Formulary (BNF). Your doctor will have a copy. In summary:

Patients without neurological symptoms should have two weeks of loading doses (three injections a week) then one injection every three months.

Patients with neurological symptoms should have a series of loading doses (three injections per week) until there are no further improvement in those symptoms. Then one injection every two months.

Each injection is 1000ug (1mg) of hydroxocobalamin administered intramuscularly.

The main neurological symptom is pins and needles / numbness in hands/feet.

I've written a document that summarises a lot of the information that many doctors seem not to know, along with references to some expert documents frankhollis.com/temp/Summar...

[sue_higgins54 in reply to fbirder]

My doctor hasn't even asked me about other symptoms he has just gone off the blood test results. I have a lot of pins & needles in both my arms & legs and I get numb toes! I also have a sore tongue and I am always thirsty. I will make sure I mention it to the nurse when I go for my first injection on Monday Thanks for your reply.

[humanbean]

Some links on NHS treatment of PA :

evidence.nhs.uk/formulary/b...

cks.nice.org.uk/anaemia-b12...

For the second link click on the various sections on the left hand side of the page.

[clivealive Forum Support]

Hi sue_higgins54 please make sure your Folate level (B9 - or Folic Acid) is checked as Folate is essential in the processing of the B12.

Folate is found in dark green vegetables like broccoli and spinach and dried legumes such as chickpeas, beans and lentils are naturally good sources. Some cereals are "fortified" with folic acid but it may be that you will need to take extra in tablet form either via you doctor or over the counter at any chemists.

The B12 injections are put into a muscle in the arm (or thigh) via a very fine needle and are normally not more painful than a pin prick and take but a few seconds.

They are not an "immediate pick me up" and a lot will depend on how long you have had P.A. before yesterday as it will take time to "repair the damage" that has been done to your nervous system.

Make a list of any and all symptoms as of now and once treatment has started and make sure your doctor gets a copy as depending on your rate of improvement or otherwise will determine the frequency of your injections. I note he hasn't even asked you what you symptoms are.... !

This is not said to alarm you but to be realistic, as you may even begin to feel worse before you get better as the nerves start to repair and it may be months before you return to "normality".

The thing is not to worry and stress about it - you are starting on the road to recovery and you can look forward to the fact that there is life after P.A. I've had it for over 45 years and I'm still "clivealive" at 75.

I wish you well for the future

[sue_higgins54]

Thanks for replying.

[Gambit62 Administrator]

PA is an absorption problem that leads to a B12 deficiency. The symptoms of PA are the symptoms of the B12 deficiency it causes. Rather confusingly many medics will use PA as a catch all for a B12 deficiency so unless your diagnosis has already involved some tests to establish why you are B12 deficient and it is those that came back and resulted in the diagnosis of PA you might be put through a few more tests and then told that you don't actually have Pa - not necessarily correctly as the tests for PA in the strict sense are not that accurate.

When your body is working properly it needs very little B12 from your diet as it is very good at storing and recycling B12 but if you have an absorption problem this process doesn't work any more - like having a leaky bucket and trying to store water in it - so injections are for life. They are generally give by a nurse at the surgery every 2-3 months depending on how up the surgery is on the bCSH guidelines and whether those are the advice that is provided for the local health authority and a load of other things. Not every area follows the national guidelines and it can be a battle to get them to recognise national guidelines.

I've come across reports of people who manage on the 3 monthly regime but I've never actually met one that does - most people find their symptoms returning well before that - and in some cases significantly before that.

Possible that you may have further serum B12 tests done - should be a few months down the line and definitely should be done before a maintenance shot and not after - the test will only really be significant if it comes back low but the probability is that it will come back high. At that point you may encounter problems as confused medics adivise you that your levels are two high and you don't need any more B12/are cured. You may even be told that your levels are dangerously high so your injections need to be stopped. None of this is correct - the need to treat is for life and PA isn't a blood disorder - what counts is what is happening at the cell level which is where B12 is used and that can be very different from what is happening with the levels in your blood.

You need to keep an eye on your folate levels

If you had anaemia then your potassiums levels should be monitored whilst you are receiving loading shots.

You need to ask for copies of the tests that resulted in your diagnosis and copies of any subsequent tests.

I really hope that you you have a good GP who isn't bound up in using test results as the be all and end all of what is going on but will listen to you and really knows just how much people vary in the way they respond to B12 and listens to you as the patient and what you are telling them about the symptoms but reality is that these are rare beasts and even those that do exist run into problems dealing with colleagues.

Unfortunately you need to be prepared for confusion, conflicting 'advice' from different practitioners, and being told that symptoms you mention are nothing to do with PA/B12 deficiency ... and that it can't possibly be B12 because you are receiving shots. Remember that there is a lot of overlap between B12 and other conditions and it is quite common for more than one thing to be going on at the same time. Generally B12 will be the poor cousin and totally overlooked as a possibility by medics if there are competing conditions but be prepared to stand your ground.

Find out as much as you can about B12 and listen to what your body is telling you about how it is working for you. Be prepared for needing to take control yourself in treating and managing the condition because it can be managed very successfully and easily. B12 isn't toxic which helps.

Again, really hope that everything goes smoothly.