My B12 Pernicious Anaemia (PA) / Intrinsic Factor deficiency would apear to be generational / DNA related, my grandmother suffered from it and way back then she had to eat vast quantities of raw liver everyday as there was no man made medication available back then. She died when she was approximately 70 years old, but it was not PA that was the cause. My mother was wrongly diagnosed with Celiac disease when she was in her 40's and after 5 years was re diagnosed with PA, when she commenced her Hydroxocobalimin injectiosn every 3 months. she lived a relatively healthy life and passed on when she was 93 (COVID).
My PA was identified when I was 44 or 45 years old, however I may have already been suffering from in for an unknown period of time prior to that. Initially, I was to have injections of Hydroxocbalamin every 3 months, however very shortly after commencing injections I felt completely flat after only a few weeks, and I literally crawled so my injection frequency was changed to every 4 weeks. Soon afte, due to my work job taking me on many short notice long distance travels I soon started to self inject as I could not always be at home when my injection was due. I would take my medication with me.
All has been going quite well - until I caught COVID in March 2022, since then my physical activity has dropped as I started having issues breathing when cycling my bike on forestry trails, I also started to cough a lot, was feeling weak with little energy and so in early 2023 I was checked out for asthma,the readings seemed secure to back up asthma, however since then I have tried around 7 different medications - none of which helped in any way, some making my cough and breathing worse. I dont think I have asthma at all. Ongoing medication trials and tests would still confirm asthma, but nothing helps it. I am wondering 'Are these limitations related to my B12 PA condition as they are common to B12 PA deficiency AND asthma???
In November 2024 I thought I had contracted food poisoning after eating an egg sandwich at a concert I was performing at, but this has not yet cleared up. I am awaiting and endoscopy procedure to find out what the root cause actually is. A few days before this I had self injected my B12, a new manufacturer, the product being Neo-Cytamen by RPH Pharmacutical AB, as my pharmacist had changed supplier. My previous 2 makes of Hydroxocobalamin made by 'Accord' and 'Gerot Lannach' had never given any issues or bad side effects. The first time I injected Neo-Cytamen medication I felt a bit woosey for the first couple of days, and I thought that feeling this way was down to me catching some sort of viral infection. The next injection 4 weeks later resulted in the same woosey feelings and again I thought 'a viral infection', and again after a couple of days I was feeling more energetic. The most recent injection of this Neo-Cytamen product was last Wednesday, and within 10 minutes of me injecting my regular dose I felt like every nerve in my body was being given an electric shock - my arms, hands, legs, feet,face, head, torso - everywhere. This 'attack' lasted around 3 seconds however for the next 3 days I could not think straight, floundered for words when seaking and felt dizzy and very vulnerable. This is slowly wearing off now, but it gave me a big shock. Up until last week I did not realise that there were many different 'recipes' for B12 injection, I had only known about Hyroxocobalamin, not even knowing about the 'natural' Methylcobalamin which some reports state is better to take.
My questions to you all are:-
1) What is the differences between Neo-Cytaman vs Hydroxocobalamin, has anyone had bad experiences using either over a period of years ?
2) Which is better to take for PA, my body does no longer have Intrinsic Factor to extract B12 from food, Hydroxocobalamin (injected) or Methylcobalamin (pill form)?
3) Has anyone in this group had similar experiences of bad side effects from taking any of the 3 variouations of medications, or others, listed above, or with other brands?
4) My next injection is due in 3 weeks and I want to be able to use the best medicine solution for my PA B12 long term medical condition.
I look forward to receiving your valued responses to the above, or I am unique in suffering ill effects of medication side effects.
Be blessed.
Intrinsic Factor
B12 deficiency or PA
B12 Injections for PA
Update on: GP stopping my B12. Replacing with oral B12.
