Increasing my the frequency of my maintenance injections.

[Beautyaddict16]

Good morning. I am new here. While I have been a member of this forum for a little while, it is the first time I am posting. Everyone seems so knowledgeable and despite having been diagnosed with Pernicious Anaemia 11 years ago, I am still learning about my condition. I am a 49 year old Woman living in Britain . At the point of diagnosis I had the requisite loading shots followed by the 3 monthly maintenance shots . About 5 years ago in despair, I made an appointment with my GP practice as I was fed up of feeling alive for only one month out the three. Literally by the fifth week after my injection I would begin to experience unbelievable fatigue, feelings of experiencing the world through a ‘fog’, embarrassing my daughter by my frequent falls due to my balance being ‘off’ and more concerning to me I would become very low in mood and tearful . All of these impacted on my relationship, social life (I became anxious about going out socially in case people interpreted my falls as drunkenness plus friends would be exasperated by my ‘no shows’ at events, not realising that I had fallen asleep in my party dress when the fatigue set in) plus work was a struggle as I would often have difficulty organising my thoughts and processing information. To cut a long story short I hit the jackpot with the doctor I saw that day as she had a particular interest in PA. She spoke to a consultant that day for advice and agreed that I could have the maintenance injections every 8 weeks instead. This helped a lot as while it was not the four weekly injection I had hoped for at least I knew I would only have to struggle for one month out of three now . Anyway to cut a long story short I made an appointment with my GP practice two months ago to discuss the possibility of increasing the frequency of injections to once a month as I had arrived at the conclusion it is not fair that I should only feel alive half of the year. I asked about testing my folate levels etc. THe fact it has taken me two months to share this stands as an indication of my shock at how I was practically dismissed by the GP. He made reference to the perceived value of increased injections as being more psychological than having any actual physiological benefits. He did not take on board that people were reporting a better quality of life with monthly injections. I think to shut me up he agreed for me to have a blood test . On the morning of the injection the GP receptionist rang me to say that the doctor had not completed the blood test form as he did not feel that I needed a test as it would only prove what they already knew...I had PA. For the first time in my life I was very bolshie with a doctors receptionist and told her “I am coming for my blood test at 11 o’clock and the form better be ready”:

Well I had the test done and had to chase the doctor for the results. The feedback from the results was basically “yes you still have pernicious anaemia”. No detail was given about folate levels etc . I feel like theres little point approaching another GP in the practice as the one I saw that day is the senior partner. Therefore I doubt his colleagues will go against him. I am so disappointed as I have been with the same practice for 48 years and have always found them nothing but supportive . I was totally unprepared for the response I received. Does anyone have any suggestions on how I could get monthly injections in the UK without going private?

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[clivealive Forum Support]

Hi Beautyaddict16 you certainly are not alone with this problem.

I too had a "one size fits all" doctor a few years back and joined the Pernicious Anaemia Society. Click on the link below and scroll down

healthunlocked.com/api/redi...

You have an interesting "story" and they may well intervene on your behalf.

It costs £20 for a one year membership and gives you access to lots of information and updates on the struggle to "educate" the medical profession on the dangers of the misdiagnosing and mistreating of P.A./B12 Deficiency

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Beautyaddict16 in reply to clivealive]

Thank you for the advice. Will definitely act on it.

[spacey1]

Hi Beautyaddict16

Clivealive's advice to join PAS sounds v sensible! But you could also think about self-injecting. It's not ideal, and we would all prefer our GPs to be positive about treating us sufficiently, but self-injecting is an option and might help you feel better!

[Beautyaddict16 in reply to spacey1]

Thank you

[Gambit62 Administrator]

Unfortunately it is likely to be very hard to get monthly injections because the vagaries of the licensing arrangements in the UK means that injectable B12 is only licensed for use for maintenance at a frequency of 2 months - this means many GPs mistakenly assume that more frequently must be dangerous.

GPs are under a professional obligation to use clinical judgement which means that they don't have to follow the licensing but it can be quite difficult to get them to exercise judgement.

Suggest you go with clivealive 's suggestion ... and you could also try pointing your GP at the area of the PAS website aimed at improving standards of diagnosis and treatment of PA

pernicious-anaemia-society....

[Beautyaddict16]

Thank you. I will definitely be following clivealives suggestion.