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.......
Follow up to contacting my GP...... - Pernicious Anaemi...
Follow up to contacting my GP......
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. . . . .
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.
Let's hope so 🙏
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.
B12 injections stopped by GP.
Injections Stopped by GP
New test results! And the GP said that is nothing to worry about...
B12 level query - and a warning...
