Going from SI every other day to every three--who's done it? And why did you decide to? Was it a successful reduction for you? Did you feel ok and did your symptoms remain at bay, or did flare ups happen that sent you back to EOD or daily?
Trying to work out a way to budget my costs & time, so whether I can afford to have fewer doses than EOD is part of that. Some say it takes 6 days or so for even PA bodies to run out of usable B12, but I'm scared to take less and go back in the painful dark wwhere I was a few years ago when I started on this EOD regimen🫣plus my doctors won't subsidise my ampoules or get me a formal dx, so I'm kind of on my own here choosing how to handle my dosage🥲
Thoughts appreciated, stay safe🫶🏻🫶🏻
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You have asked a question that cant be easily answered as we are all different and have different needs. I have been doing SI for 4yrs now and find if I try to cut my injections down my symptoms return.
This is fair, it seems many people on this board and /r report the same about frequency.
I guess I’m just worried about symptoms returning or losing all my ‘game’ progress, you know? Like you say, it takes years for us to heal and reset to a functional level. Yet, there’s balancing the reality that affording this out of pocket for so long isn’t great for my financial or social health, a sadistic choice people on low income or welfare have to consider in this hypercapitalistic hellscape. So idk whether to try to cut and risk pain/regression, or start skipping meals…
It is a difficult decision for you to have to make in fear of putting your health in jepardy. All you can do is try and see how you get on but please try not to skip meals. I'm afraid it seems to be a case of trial and error . Some report feeling fine when they have lowered their dose others report symptoms return ! How long have you been injecting and how often ?
I have been thinking about cutting my dose to every three days as advised by Dr Klein. But I am still getting symptoms and have only been EOD for just over three months so feel it is early days for me.
Ah so you’ve been advised to cut down? If you feel comfortable elaborating, may I ask the reason you were given for this?
As for your symptoms, correct to say 3 months is barely any time at all, and your body is still in the inchoate stages of healing. It took me a few years of EOD (2021-4) to hit a plateau and feel mostly better, and people I’ve spoken to online (dozens at least, perhaps a hundred indirectly) all report the same. Here’s to your recovery continuing to progress🫡🫶🏻
I emailed him my blood test results at the end of the three months of EOD and he said they were all better, so he suggested I cut down to twice a week. Which I was surprised at as he always advocates go by symptoms not levels. I probably should email him and ask him his reasons.
It is far too early for you to consider cutting your dose down. I cant even contemplate why Dr Klein would suggest such a thing when your still experiencing symptoms. I find this a strange action for such a reputable Dr to suggest,
Just like Chickens44 I was advised following 3 months bloods for ferritin, bit D and folate that I was OK to drop to every 3 days. However, within a few weeks I started with symptoms again so was advised to go back to EOD. I struggle to "sit and chill" (as my husband keeps telling me to do) so I think I'm burning through my stores quickly and still need to odd daytime nap at this frequency. I am a month on from initially trying every 3 days but am reluctant to drop until I feel a bit better. It's really difficult to know what to do but my gut instinct is to stay on EOD longer. I must add that I managed to fight for NHS prescribed B12 ampoules though.
It's trial and error. I know some people who have successfully reduced from alternate day and feel fine. I have tried to reduce in the past and have had symptoms return (subtly at first, then very obviously once I'd got to fortnightly). At the moment I've reduced from alt day to 3x a week, following discussion with my haematologist because i find the injections painful. So far I'm ok. The aim is to reduce to twice a week as a next step, but I've just had surgery so I'm not reducing until I'm fully recovered from that.
Try a small reduction, give it a few weeks and take note of any change in your symptoms, that would be my advice.
Hi as Jilly mo has already said , we’re all different . My experience was I needed to be on EOD for about three years then I slowly titrated down to 3 days . I did this gradually like eg 2 days / 3 days for a while then noted how I felt. I kept a diary . Sounds laborious but it helped me see what triggered setbacks etc. I’m now on every four days and so far most symptoms have not returned . But it’s early days on 4 . So I’m watching and waiting. It’s all an experiment for us individually . What works for one doesn’t for another. What I will say though is I have to still be careful I don’t overdo things. I can still get fatigue if I do. Good luck with it all
Almost a year into EOD (and periods of daily when unwell with viruses), I’ve struggled to go down to every 3 days. Part of that is whenever I’m in a position to try I get COVID or another horrible virus again, which pushes me right back 😭, but I’m also increasingly interested in this whole idea that your body could adjust to the higher dosages.
So what I’m personally contemplating trying (huge provisos of *not a doctor* *not a recommendation* etc.) is injecting 0.8ml of my EOD dose a few times, then 0.7, then 0.6. And if I’m successfully going two days with no obvious B12 symptoms on that, then giving myself the whole 1ml and trying to go three day.
But It’s really important to note that I’m considering this because I suspect the actual B12 related nerve damage has been healed and I want to gradually reduce the amount of vitamins I’m on. That’s a VERY different situation to cutting down due to expense or practicalities. If you think you’re still healing rather than maintaining then it’s probably wisest to keep to EOD. As someone else said, economically it’s probably more “cost effective” to keep going with EOD and stay well than reduce too soon and crash.
Also just to add, the whole idea of returning symptoms gets more tricky when there’s multiple things going on. I also have hEDS, which can cause nerve impingement and symptoms similar to B12 deficiency. I have hormonal migraine and get anxiety and parathesia as part of my prodrome/aura, and whilst B12 treatment helps I don’t think it explains everything. I’m also a woman approaching the age of perimenopause, which will of course will screw everything up. 🙄😏 And I think COVID throws my methylation beyond my pre-existing PA issues.
What am I saying with this? Probably that if you make any changes, it’s important to keep an open mind and regularly check in with yourself.
Thank you for saying this, holistic health really plays a massive part in treating and approaching symptoms for women such as us. And sorry to hear that you're dealing with so much all at once, hoping things look up for you or at least become easier to manage.
Like you my age (early 30s) means that perimenopause is on the horizon or around a few corners too, and tbh it has crossed my mind as a worry that it might somehow affect my B12-related neuropathy among other things. My mother's body kind of collapsed during menopause proper so I have the fear big time!
Like many users here, I try to keep a sketchy informal record of when I SI and how I'm feeling symptom-wise every week/month--could probably be more detailed with it, but it's better than nothing.
The link between methylation and C0VID is interesting, I hadn't considered this. Have had the dreaded virus twice myself, pretty mildly-moderately, though the effects of fatigue have lingered. Is there any resource that explains this simply and in more detail?
I self injected every other day (EOD) for over two years before I felt able to reduce my injections, not because I felt I ought to, but because I thought I might be able to. I wanted to know if I was able to maintain the level I had reached without losing any, and by then thought it possible. I believe that any/all of my symptoms are controlled to the best of my ability, but not gone.
It worked for me to reduce down to an injection with a two-day gap or with a three-day gap but never more of a gap than that for me. This depends on how I am feeling - and any time I need to up this again for a while, I do: during recovery from illness/when stressed /busy.
So I'd say generally, I self-inject twice a week.
My ability to remember since B12 deficiency is worse - by that I mean that I am better able to recall anything done before then, but not so much since. My concentration has also been affected and I find now not having much of a reliable "autopilot function" tiring at times. Shorter tasks with a clear start-to-finish time not a problem.
I feel that I reached a plateau with improvement on these particular issues. All other symptoms of mine can be controlled with injection regime.
I have been self injecting since 2018, at first just when I had major crashes, then I started to really study and get involved with this group of fine people. I began EOD and started to see some improvement, then moved to daily and the neuro symptoms really started to improve, now I have been doing twice a day for over two years and for me, that seemed to be the key to real major improvements. I did have a doctor that insisted that I try to move back to once a day. He had been reasonable with me about my routines, so I agreed. But within a week I could feel some symptoms returning. After two weeks I went back to twice a day. I began to feel better almost immediately except the restless leg movements that had returned took over a year again to get better. I suppose my long-winded story ends with be careful and very observant of your symptoms. Neuro symptoms can return very quickly and take a long time to go away again, if ever. Everyone reacts differently. Even after all this time, I still have some issues that have not improved and I suppose they never will. That's just the way it works. I certainly understand trying to save pennies when you can. Just be very observant and if symptoms return, I'd look for other ways to cut your budget. Best of luck to you.
Hello friend, I have tried this both unsuccessfully and successfully. The first time was about 5-6 months in with EOD injections. I expressed a desire to try less frequent injection, and my naturopath suggested 2x/week. The change was too soon and too abrupt, and I hit the wall about three weeks later. It was a major setback for me -- symptoms flared, fatigue came crashing down, etc. I injected every day for a few weeks and went back to EOD for several months.
The next time I attempted to spread them out, I went to 2 injections every 5 days and took some time to adjust to that -- a couple of months. Then 2 injections every 6 days and acclimated to that. I'm now 2x/week -- Monday and Friday and doing pretty well with it. You'll know in pretty short order if you're not getting enough, but I encourage you to go slowly and try adding a day at a time rather than making a big jump.
Thank you for the kind words, and glad to hear you've found a regiment that really works for you.
Tbh I think six months in is a little soon for anyone, the same would have happened to me if I tried that, I'm sure. Am assuming after that you moved on from your naturopath from back then. At least you righted the ship on your own, that had to be empowering.
2 every 6 would take a little pressure off me time and money-wise, but since I've been 3 years on EOD pretty strictly, like you say I am going to need a graduated step-down method.
How much are you paying per injection? Is there a way for you to get B12 at a lower price? I am lucky that in Canada I can buy the injectable B12 over the counter. For both the needles and the B12, it costs me about 1.30 Canadian per dose which is 0.73 pounds.
The ampoules I get in 100 a box come from Germany or the Netherlands usually--where one can buy it OTC, what bliss--and roughly cost about £80-90 (£100 ish with postage and handling). So per dose they aren't terribly expensive and do last for months. Needles & barrels I source within the U.K. , and they're fortunately fairly cheap as well.
If I were making even slightly above minimum wage, they'd all be easily affordable as medicine goes and I'd have no issue paying these prices. It's my financial situation of late and for now that's the issue. I've asked my NHS board and GPs to help me find a way to subsidise, but they've been adamant that they can't and won't help, because it's against their guidelines to admit SI.
I oughtn't to complain much, though. Relatively-speaking, we're still lucky to afford our medicine. I have a cousin with serious congenital arthritis whose medication costs run into the thousands monthly, and she has to have a stressful corporate job 7 days a week to cover it.
Just like Jillian stated. we are all different. That being said, I have tried and the symptoms came back this is even after daily injections for 2 years.
Oh how annoying, so sorry to hear that! Hopefully daily or EOD is still feasible for you. My worry is exactly as you describe, that my awful debilitating symptoms will come back. Life is so different and more hopeful for me when not working through pain and confusion and depression that deficiency causes, am sure you can relate xx
I think that because we are all different there is no one answer that is right and nothing is a given or constant.
You just have to do it and see and keep a diary and notes and realise that it won’t instantaneously return to those dark days if you are a day later. Injecting . You are in control of your injection regime and if you need another, you can while you work it out.
I learned what my first returning symptom(s) was. I find I can have one of several and now use these as the trigger to inject. A bit like taking a paracetamol just as the headache is coming on. I have gone from EOD on 1mg/ml to 2x per week 1.5mg/ml. It has probably taken me about 9 months to feel completely at ease with my regime.
Doing this I bear in mind how busy or emotional (even a weepy movie will do it), different brand or concentration or batch can affect timings. I also inject in advance of a particularly busy or intense physical time.
Don’t be a slave to the diary dates, but keep a note of when you inject and triggers/events and take time to reflect back. My injection dates and times vary during the week and so will yours as your work and social schedule changes and you learn to read your early warning symptoms.
Thank you for the kind words! Yes, I think you're right that a responsive and present approach to dosing is the best. Making allowances for life to happen and listening to the body (where I sometimes fall down tbh--I'm working on it though!)
You hit the nail on the head that it's mostly fear of going backwards into symptom Hell that's stopping me trying. And that remaining aware is the key to preventing a backslide.
The weirdest things do deplete as well, don't they? Not just the obvious like stress, exercise, etc. I know if my social battery is drained, my B12 usually dips in sympathy.
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