Follow up to contacting my GP......

[BeachArt]

Some of you may remember that I had been in receipt of regular injections from my GP, but not regular enough, so I also sourced my own supplies. My prescription for Hydroxocobalamin was recently reduced to the standard 1 injection every 3 months. So I sent a letter to my doctor requesting they be reinstated at a more regular frequency. I took this letter as an opportunity to highlight the plight of PA/B12d patients: the difficulty in getting a diagnosis, misdiagnosis, under treatment, the lack of knowledge in the medical profession, etc. I have had an initial response from my GP, in which she is requesting that I let her know how often I need injections. I am not hopeful she will agree to twice weekly, which is what I need. But it wasn't just a bog standard 'one injection every three months is the guidelines'. Obviously there is still time for that lol, but fingers crossed.......

[OldmanD]

I'd not think your GP will agree to twice weekly as an ongoing thing although I hope ye get what ye want.. . . . . . The NHS is a complete mess with staff leaving every day in numbers hitherto never heard tell of. . . . .

[Myoldcat]

Well done, you have taken the first step and had a positive response... My GP recently agreed to prescribe sufficient B12 ampoules for me to self inject twice a week, so there can be good results! Maybe print out the info on B12 being needed every other day until neuro symptoms disappear?cks.nice.org.uk/topics/anae...

Or anything from the PA society to support your request? And best of luck.

[BeachArt in reply to Myoldcat]

Thank you. I gave my doctor a lot of info when I sent my letter. I'm not hopeful she will agree to twice weekly, but I'm hopeful it will be more than one injection every three months 🤞

[Myoldcat]

Let's hope so 🙏

[Cherylclaire Forum Support]

That is good news.

If you do ask for 2 injections a week, this is generally the closest they can get to providing EOD injections.

If you have neurological symptoms, you could ask for EOD or at least 2 a week on this basis: that the treatment continue until no more improvements can be gained by doing so. Nerve repair can take a while. This would be in accordance with treatment guidelines.

Agree on a maintenance frequency for later, but ask that this be monitored in order to ensure that it is up to the task. One job: maintaining your gains. If it fails to do this, it will need adjusting upward, thus preventing a cyclical relapse.

My GP ensured that I was given 2 injections a week, which continued for 6 months because it worked, then an agreed 1 injection a month. All of this was not my suggestion but came from a "B12 expert" hospital consultant she had contacted about my case.

Although this eventually did not work for me and I had to end up self-injecting at EOD anyway, it was a genuine attempt on her part to discover what would actually help, rather than follow the every-3-months regime that cannot possibly be useful for everyone.

Some of the more observant GPs must be uncomfortably aware of this.