Slowly deteriorating

[ExploringWonderland]

I got diagnosed with PA in 2012, had the loading doses and was started on 12 weekly jabs. Going well, felt pretty good. In 2015 I started to notice that the last 2 weeks before my jab I was becoming really unwell, mouth full of ulcers, brain fog, started having palpitations and awful stabbing central chest pain. Long assessments with cardiology to discover there’s nothing wrong with my heart (I was pretty sure of that anyway!) and the practice nurse at my surgery said she thought I needed my jabs more regularly. She moved them to 10 weeks with GP consent. Had a great effect, chest pain and palpitations settled, other symptoms settled. Fast forward to 2020. Horrendous Christmas, lots of stress, mother in law diagnosed with leukaemia, husband and son really ill with chest infections, just one thing after another. Started to feel awful, vertigo, memory loss, speech loss, peripheral neuropathy, spider crawling sensations on my face, extreme fatigue. You name it. It hit me with a vengeance. Had to have a month off work. Top up jab given at 8 weeks and they’ve now moved my jabs to 8 weekly. Symptoms settled a lot. Just had the next one following the top up but even being so soon after the peripheral neuropathy, spider crawling and memory loss has come back. My symptoms just seem to be progressively getting worse, are people finding this? The memory loss is driving me crazy, I’m getting so annoyed with myself!

[wedgewood]

Sorry to hear how unwell you are . I’ve found a weekly injection keeps all my symptoms at bay . You probably need more regular injections of B12 . Have you thought about self-injection?

[Cherylclaire Forum Support]

It seems as though your nurse and GP are working with you to get an ideal frequency for you, which is really good news. I wonder if they would allow loading dose to continue a bit as a trial, because you were doing so well previously, then deteriorated at a time of stress?

I think it can take a while to get over a blip and get back on track.

Wedgewood could easily be right - that you just need more injections than you are getting. That possibly your previous frequency was fine only as long as life stayed fine too.

These are hardly stress-free times for any of us (including nurses and GPs !) - so it might be worth asking the nurse to teach you how to self-inject so that you can avoid frequent trips to the surgery. Others on this forum have had that opportunity and been supplied with B12 and syringes etc. If you think you could manage it, this means you could gradually reduce the dose yourself as symptoms recede.

It could be worth having the discussion at least. They have been employing best practice and treating you as an individual. Hope that continues for you - it's good to see.