Is there ever a time when to discontinue B12 injections?
If no perceived benefit being obtained, what is a reasonable time to give the treatment to work - 3months, 1 year, 3 years or more? Is there any data available to HealthUnlocked PA members that summarizes how long they were on treatment before they decided to give up?
For those of us who obtain significant improvement of fatigue symptoms, I wonder how many continue indefinitely with B12 injections, fearful of consequences if they give up, as opposed to trying to reduce frequency of injections to see how little injecting they need to do to maintain a manageable lifestyle?
I am sure I am not the first person to think about this, but have not come across any comments from members about personal experiences in this regard. Interested to hear what your own experience has been?
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cHi13
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I’m trying to understand where a question like this comes from?
For me, stopping B12 would be like a diabetic person stopping insulin. Or a normal person stopping eating. I do not have any genetic predispositions to PA and acquired my B12D from stomach surgery.
I do not see further improvements of some nerve damage and realize that it is more or less permanent. But, if I stop B12 now, the damage to nerves would just start / resume again.
I was diagnosed over three years ago and had a range of symptoms some of them unique as far as the vast majority of PA sufferers on here. Over that time, many of the symptoms ceased very quickly after the injections- extreme fatigue stopped almost immediately - but a few recurring symptoms remained but declined and ceased after around two years. I still get some symptoms but this 12 week cycle even they have diminished and in some ways have changed. I have started a new symptom which is pins and needles flitting about my body - the face, hands and legs - which is quite irritating but not very severe.
I suffered from b12 deficiency because I was a vegetarian verging on vegan and my doctor prescribed omaprezole on a recurring prescription which I took at 10mg a day for over 6 years.
My symptoms were mostly related to damage to the myelin sheath as far as I can tell which accounts for some of the weird symptoms that I had.
The simple answer to your question has been stated numerous times by administrators on this site which is, essentially, if you can absorb b12 naturally, then you don’t need injections. personally, I’m not taking a chance with that and intend having the injections for as long as possible and have just persuaded my doctor to allow them every 8 weeks instead of 12.
Many thanks for your reply, Alfabeta. Good to hear how successful B12 treatment has proven for you. Yes, I had a read a little about how people who were vegan or vegetarian were at greater risk for B12 deficiency. I think you said it well, at least from a PA aspect, if you can absorb B12 naturally, then you don't need injections. Unfortunately as you and I know there are many of us who have no impairment of B12 uptake, yet nevertheless share many if not all the typical symptoms of B12 deficiency. In my case severe and chronic fatigue is the most debilitating.
There are some potential causes of B12 deficiency that can be temporary eg pregnancy. People with Coeliac disease can be prone to B12 deficiency due to gut damage but strict adherence to a gluten free diet means hopefully gut damage improves and more B12 can be absorbed from gut.
From a personal perspective, I do not have a confirmed PA diagnosis but know that if I stop taking B12, my B12 deficiency symptoms return very quickly. I once stopped taking B12 for a period of weeks...never again...I learnt that for me it was dangerous to stop.
I think a lot of forum members who self treat do experiment with different time intervals between injections/ B12 supplements.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Your reply and multiple references are very helpful. My own situation appears very similar to your own - I do not have B12 def caused through impaired uptake or because of any gastric surgery etc. I do have a history of arthritis in the family and show considerable inflammation symptoms including some damage to nerves. Chronic fatigue could well be the result of an over-active immune system causing inflammation. B12 with beneficial effects in this area is being tried to turn things around - early days, only about 4 months so far. but with no signs of improvement self injecting. I do have the books you recommend and found most useful. I hear Dr Chandy's book "Vitamin B12 deficiency in clinical practice" is about to be published - an acknowledged authority in the field. Thanks again for your comments.
"only about 4 months so far. but with no signs of improvement self injecting."
I resorted to self treatment as was unable to get regular NHS treatment. It took several months before I could see clear improvement. I am still improving a bit every year.
Link about "What to do next" if B12 deficiency suspected
"I do not have B12 def caused through impaired uptake or because of any gastric surgery etc. I do have a history of arthritis "
Have you ever been tested for PA (Pernicious Anaemia)?
In UK, this would be an Intrinsic Factor Antibody test (IFA). IFA test is not always reliable and it is still possible to have PA even if IFA result is negative (called Antibody Negative PA). Some countries use a parietal cell antibody test (PCA) but this is not recommended as a diagnostic test for PA in UK.
You mention arthritis. If this is auto immune arthritis , having one auto immune condition can increase chances of developing another eg PA, Coeliac etc. Has GP excluded other possibilities eg lupus, Hughes syndrome (Antiphospholipid Syndrome APS) etc?
Many thanks for all your suggestions. Many I am familiar with but not all have been acted on. Plan to look more closely at the latter you mention to see if they might apply in my case. Great suggestions, thanks again!
Ok, I’m in a different frame of mind tonight. Apologies for tone of my previous post.
If you feel things are not progressing then start a logbook of all your food, meds and especially symptoms.
To monitor progress check against the same day on the previous (or in six months- to “six months ago”). Reset the clock and treat the jab day as day zero each cycle. Then compare day 10 to day 10 in a previous cycle.
The logbook supports short term memory loss as you forget where you were, sometimes even yesterday.
The roller coaster ride just messes with symptoms on a day to day basis to compare and monitor progress by memory alone.
Hi, no worries - 'no harm. no foul' . Many thanks for your suggestions. Yes, indeed I have been logging for some time how I feel, my meds, and what I have been doing day to day. Nothing springs out at this point. Good idea about resetting the clock periodically and comparing similar days in each cycle. With 'brain fog' (and associated memory lapses) accompanying chronic fatigue symptoms, the logbook makes lots of sense. AS mentioned in my reply to Sleepybunny, what prompts my query, is that after 4 months injecting I have seen no improvement, so wonder what is a reasonable time to pursue before giving up on the treatment.
I have been self-injecting every other day since September 2017.
Before that, since my first loading injection in February 2016, I have been on the 3-month regime which made me very much worse very quickly, then on 2 injections a week where I managed to be okay (ish) for 6 months, then on monthly injections for a few months,.... well you can see how wrong this was all going.
I started self-injecting because haematologists had advised my GP to put me back on 3-monthly, certainly not more than every other month, as per guidelines, which I knew would soon make me worse (again) and I was desperate to keep my job. I had been off sick for 15 months when at my worst.
I have found progress to be slow and easily interrupted by "blips": sudden unexpected and disheartening reminders of the bad old days for as-yet inexplicable reasons. But it is a good idea to keep diaries of symptoms: I look back to a year ago and remember that it was a lot worse then. I can walk, don't need an afternoon nap, can do more than one thing in a day, can talk to people without shouting or crying, I can understand what people are saying to me and I don't get lost or feel lost. Not quite the miracle that I was hoping for, but a start.
Some things may be beyond me: I can't read a book, so I'm starting with graphic novels. I haven't got the strength in my arms and legs that I took for granted. Less brain, less brawn, less memory, but I'm still working, my hair has stopped falling out, my gums don't bleed any more and my teeth aren't loose.
Of course I'm looking for more.
Sometimes I think would an injection every day get me there faster ? Am I stopping my own progress ? A completely symptom-free day would be a bit of a bonus right now.
Ask yourself what you expect to happen and in what time-frame. I would say it gets imperceptibly better if you aren't keeping your eye on it. Keep keeping records and stay hopeful. People here can help you with that !
Many thanks for your reply. Your comments are encouraging. Everyone is different. Causes of B12 deficiency related to fatigue, have many origins, not just PA. I too have resorted to s.i. every other day after getting no satisfaction from the B12 form my doc prescribed for me here in the US (cyano-cobalamin: loading doses every day for 6 days, followed by i/wk for a month thereafter). Am now using hydroxy-cobalamin (every other day) which your NHS now uses, rather than earlier, cyano-derivative. Your comment about whether or not injecting each day might improve the situation is an interesting one - in my own case because initially I had difficulty sourcing hydrox-cobalamin (1mg/ml) from Rotexmedica, I decided to try Pascoe's product (1.5mg/ml). Taking this every other day over a period of 21 days, I am convinced I was already seeing some form of turnaround. I then switched to the Rotexmedica product (1mg/ml) every other day since I was now able to source it, and found an immediate deterioration; fortunately this has graduallyturned around but only over a prolonged period. Clearly in my case by taking a higher amount of B12 the Pascoe product had an addonal benefit. This matches your own experience injecting more frequently than once per 2-3months. Thanks again for sharing.
Interesting, cHi13 - keep in touch and let me know how you get on.
Think I've been tested for everything now at least twice. Have a consultation next month with an Inherited Metabolic Diseases expert, who has been looking at my DNA - perhaps this might be an answer: "There's always a story" he told me a year ago.
Interesting option you raise about whether DNA analysis can throw light on sequences we might share with others similarly afflicted. In turn do keep me posted on whatever you find out. I will do likewise. Goodluck!
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