I am trying to figure out how often to self inject. Do I inject when I start to feel “off” or do I just put myself on some sort of schedule?

[Themaid]

Self injection schedule

[pvanderaa]

Schedule for sure. If you wait till you’re feeling it, it’s too late. Then You take your injection and you’ll feel much worse.

Start a logbook of all your symptoms especially in the days before and after the jab. You will see a pattern.

The symptoms that appear after the injection are very counterintuitive in that increased pain or bowel issue can occur. The stronger these “good” symptoms, from nerve repair and improved metabolism, are and indication of how deficient you got before the injection.

[Themaid in reply to pvanderaa]

Thank you so much for the advice. It seems as though I may have to be on an every other day injection schedule!

[wedgewood in reply to Themaid]

If every other day suits you , that’s good . There’s no danger of overdosing on b12 , unlike some other vitamins . Don’t forget a daily 400 mcg ( micrograms ) of folic acid , which works with b12 .

[Cherylclaire Forum Support]

I wouldn't experiment with reduction until you are stabilised. Gradually reducing injections from a healthier position will give you an indication if it is working or not. Also makes you feel like progress is being made. Think of it as starting again, reloading , if you have been on an NHS regime that did not work for you.

Logbook a great idea. I repaired so slowly, I did not notice - logbook or chart will remind you of how much you have improved, help identify any patterns and remind you of symptoms you've forgotten about having. All good.

Can also be useful if memory is impaired- especially if you have consultant/GP appointments. They often ask questions that you can't answer, like "When did you first notice that you couldn't feel your shins?" or "How long after your injection does the tinnitus continue to improve?"

[Themaid in reply to Cherylclaire]

This is great advice. I feel so out-of-it that I can’t even make a proper self assessment. I do keep a logbook and looking back I realize that the last time I felt good was last year immediately following loading doses. Then with my just once a month injection I started to slowly slide backwards to my current sorry state. It has taken me a long time to work up the courage to self inject. My doctor is completely against it. She thinks anything more than a once a month injection produces a mere placebo affect. The sad stories I read on this site just break my heart. I wish some very powerful public person would be diagnosed with P.A. so it could get recognized as the devastating condition that it is. Thanks for your kind reply, Cherylclaire.

[Cherylclaire Forum Support in reply to Themaid]

I still think our best bet is the Pernicious Anaemia Society (PAS) research. This is to determine why certain people with PA need more frequent injections than others . Trials show that there is a clear difference between the two groups, evident in stool samples.

While your doctor believes that anything more than one injection a month is a placebo, I had two haematologists warning me off by stating that B12 was "toxic", "carcinogenic" and "highly addictive". I have found no evidence to support either of these opposing standpoints. Your GP might honestly believe her advice, but I doubt that the two haematologists were being as genuine.

So : don't inject more frequently because it is pointless / don't because it is harmful ?

We are the ones who are going to need to provide the proof - because they don't have to.