How many loading doses

[JessB94-]

Hi, I was diagnosed with PA just before Christmas and am struggling to get any help or information from my GP. I have just had my final loading does number 6, but if anything my symptoms are worsening not improving. Every time I ask the nurses when I should start to feel better they say they don’t know and that I am going to now go to one injection every 12 weeks. Should I be pushing for another blood test and possibly more loading doses or should I just wait and see how I feel after my next does in 12 weeks?

[Sleepybunny]

Hi JessB94-

I left a lot of info in thread below yours "Elderly relative's B12 injections stopped by GP after 30years". There may be some info of use to you.

See also pinned post "Various PA/B12D resources" if you have time.

[Nackapan]

I got worse before better.Once on b12 injections a b12 test not needed.

A multivit / minerals with folic acid in may help you.

If you have neurological symptoms I jections shoukd continue every other day until no more improvement.

In their bnf guidelines.

I wax supposed to wait 3 months after loading.

Lasted 5 weeks and very ill .

Took a few months of eod for improvements to start .

[Litatamon]

Do not ask for a b12 test, that could backfire on you. Testing after supplementation has little to no meaning. And not all doctors know that. And it could lead to erroneous conclusions if your doctor is not clear with his or her knowledge about PA. stichtingb12tekort.nl/engli...

stichtingb12tekort.nl/engli...

And as others have noted it is extremely common to feel worse before you feel better, when you begin injections.

All the best to you.

Just in case you ever get the "your b12 is too high, we need to stop your injections" spiel -

stichtingb12tekort.nl/engli...

[Cherylclaire Forum Support]

Good that you have a PA diagnosis - I'd certainly keep a safe copy of that diagnosis !

I would say that, for some of us, the 6 injections of the loading dose has little effect, and so the three-month wait for the first maintenance injection is far too long. If there is an improvement gained by the loading dose, I'd still want to be satisfied that my symptoms were under control first - why would anyone choose to maintain any of their B12 deficiency symptoms ?

Unfortunately, many GPs do not feel confident about trusting their observational instincts, and are only willing to go by bloods on this. And measuring serum B12 after injections have started will obviously show that B12 in the blood is high. Whether the injected B12 is reaching tissues and cells, and managing to repair nerve damage, might require a GP with a different approach.

If you have neurological damage, the B12 injection frequency should be every other day (EOD) until no more improvement can be gained, and only then should maintenance injections (every 2 months is suggested in medical guidelines) be started. That should require your input !

Some people find that the suggested maintenance injection regime fails to maintain gains made during loading: for this reason, it is worth starting a daily chart or diary of symptoms: include frequency and severity - and include when a B12 injection was given. This might help you to work out what frequency is most effective in preventing a return of symptoms for you. Otherwise you could be stuck on a cyclical rota of deterioration and improvement which is not the same thing as maintenance.... all this monitoring will take time.

Meanwhile, get the following checked (if it hasn't been done yet):

ferritin, folate, vitamin D, thyroid.

Helpful to know where they are now and what direction they are going in.

[Oneash]

Do make sure you are getting plenty of folic acid , marmite, chicken liver, beans, broccoli and other green veg, or a supplement. Folic acid and B12 work hand in hand in your body. I stomped a bit and have my doses every 8 weeks. The Doctors do a useless second blood test to see that there is some reaction.

But yes you can feel a lot worse before you get better. Your body has been starved of oxygen, your mitochondria hasn't worked properly to release energy and your nerve coverings may be weakened. So as your system readjusts to working aerobically, all the worn out bits of you start to mend. This is known as reversing out.

Big hugs.