On Friday 16th April 2010 I joined the Pernicious Anaemia Society and posted the following: “I was diagnosed with PA back in 1972 consequent upon having had surgery for a peptic ulcer in April 1959 at the tender age of 17. In those days I was not many years from having to be put on a diet of raw liver - 3 times a day!!! Thank goodness for Cytamen 1000 mcg...... So, for nearly 40 years I have "got by" with my 4 weekly injections - my "little shots of Red-Ex" as I call them. However when I complain to my GP that in the run up to the next jab I start to feel symptoms returning… he simply laughs, telling me (essentially) that it's "all in the mind" and that the dosage will last for a month. How can this be? This "one size fits all" syndrome that doesn't take into account size, (I'm 6'4" @ 13.5 stones) age, activity or metabolism. I cannot believe that I am the only person with PA who experiences this feeling of exhaustion in the run up to the next shot - or am I?”
I was astounded at how many “fellow sufferers” there were “out there” who experienced the same thing .
I am now 82 years old and still "clivealive" and my wife Gill gives me my injections - when I want and need them.
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clivealive
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hello clivealive, hope you had a good christmas day and wishing you a happy new year. Yes, I agree with your post, thank goodness for injections from your wife. x
You are correct by pointing out your height, weight, metabolism. I have never delivered a baby at the same time, day, all weighed the same, had the same head circumference and were the same length.
Regarding the 4 weekly injection, I have never topped an epidural exactly every 30 minutes. A woman tells us when she needs the medication.
We use ice to see what sensations a woman can feel because the Nervous System is pretty complex.
So do you remember the "penny shots" of "upper cylinder lubricant" found beside the petrol pumps at garages back in the day?. I came to think of my cyano as having a similar function 💉
No Clive , you are not the only person. The injection work differently for each one of us. We just have to manage ourselves if we want more out of life then existing. I am 72 1.72 and 68 kilos . My level of activity also dictates the frequency of my injections as does being hit by a cold, virus a mishap etc etc. I wish patients once diagnosed received proper training in how to inject and been given an appropriate supply of Hydroxocobalamin injections and advise on go-factors. Occasionally being checked out as any patient on their books. Keep doing what you do and actually keep enjoying the good days it gives you. ♥️
Thanks ACritical - by the time I wrote that in 2010 and joined the (then) P A society forum I'd "lived" for 40 years in complete ignorance and didn't know of anyone else who had the "condition", It was only my (then) doctor's intransigence in refusing to increase the frequency that led me to do my own research via the society's forum.
Your insperation and wisdom has helped so many of us on our journey of recovery. I agree with the one size of cap doesn't fit all and feel we should all be treated as individuals. I now inject as and when I feel I need it which at present is twice daily.
You were a pioneer in the 'modern' era of B12D/PA. And what a struggle for you to endure the absurd, rigid and negligent attitude of medics to the condition. Roll on the 'post modern' era.
Sorry for the confusion fra48 the cyanocobalamin B12 injections were originally prescribed to be injected once every four weeks. This was completely arbitrary in the same way as when Hydroxocobalamin was introduced to be given every three months,
Fortunately this "one size fits all" thinking is being eroded by the work of the Pernicious Anaemia Society.
Only had my diagnosis for a little over a year … not out of the woods yet, still feel as if I am walking a knife edge between confidence and despair but people like you are pure inspiration.
It's always so lovely to read your posts, you are an inspiration to many on here who come for advice, often in a state of bewilderment (posh name for 'brain fog'!) after having been basically gaslighted by their GPs about their jabs for PA leading to 'dependency' or 'all in the mind'. We all know differently and you and other core contributors here are the safe haven for getting advice, reassurance and support in this very individual journey about PA.
Very best wishes to you and your wife for the Season and for 2024 - long may you (and us!) relish the benefits of our 'little shots of Red-Ex'!!
Merry Christmas and Happy New Year.Another year survived by Clive alive. And your wife too right there by your side. Congratulations on a long life, a successful, long marriage and living with P A. For your entire life.
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