PA-B12 Journey

[LJH50]

Since being diagnosed with PA 6 weeks or so ago, I'm learning so much and want to thank everyone on here for their advice and arm around me. One thing I am learning is each of our experiences are unique but with similarities. I have challenged my GP surgery over the 5 v 6 loading injections (Glos NHS) and after an NHS link on here was forwarded to my GP they have now changed their policy from 5 to 6 for all PA sufferers. Small steps. I'm having my 2nd set of 6 now after a 2 week break from the 1st 6 with the minimal improvement in my symtoms but there were improvements altho short lived. My 100 doses of Hydrocobalamin have arrived from Germany and my Husband is able to inject me. I dont know how often to SI, I was thinking EOD to see how I get on. I'm taking the B12 spray only because I have it here and not to waste it! In an ideal world I wish I could test my b12 levels regularly to see what's happening but all I know whilst my symtoms are still present I'm not getting enough unless my neurological issues are irreversible. So my PA journey has began. Thank you again for everyone who has advised me on here, it is very much appreciated.

[Nackapan]

Hope your EOD regime gives you some results soon. Stay with it

Your b12 will be high on injections. No need to know what it is.

Just go by how you feel.

It does take time

Well done for making s positive change for all at your sugery

👍

[fbirder]

The ideal frequency is - as often as is needed to keep symptoms at bay. The only way to find out is to experiment.

There are two ways to experiment.

Try starting with a planned long delay between injections - say three months. If, after 6 weeks symptoms return, shorten the gap. Keep on shortening until the symptoms do not return after several injections.

Or

Start with a short gap, say every other day, and increase the gap until symptoms start to appear. Then shorten the gap again.

[LJH50 in reply to fbirder]

Thank you for this. As my symtoms are still here after 6 then 2 weeks off now on another 6, would I continue at home with 1 EOD until they start to improve?

[Cherylclaire Forum Support in reply to LJH50]

Since you have neurological symptoms, the advice given in medical guidelines is every other day injections until no further improvement is possible (note: not "until you get worse again"- you should expect improvement)- then an injection every 2 months to maintain that optimum level.

So I would try for that. It may take some time, and progress can be slow. I'd keep a symptoms chart or list, so that you can get a morale boost from noticing the most gradual of improvements. If you include when you are having injections, then you will be able to check whether later maintenance injections are keeping you stabilised.

If it takes a while to get improvements, I would more gradually decrease injections for a maintenance level, so that you can take a step backward if it stops being effective at any point, avoiding deterioration.

Don't be disappointed if this happens, as not everyone can manage on 2-3 months top-up. You can always try again later. We are all different - and some GPs are aware of this. I self inject frequently to keep most symptoms at bay most of the time, and have never seen any pattern emerge since 2016, although I continue to watch for one. My cousin is fine on a maintenance injection every six weeks- given by the NHS despite this not being a frequency mentioned in any guidance.

Wishing you well.