I am an active, generally fit and healthy 66 man, and I eat a very nutritious, well balanced diet. I was given a confirmed diagnosis of PA about 18 months ago. My doctor started me on once monthly, then twice monthly injections, but that didn't help at all to alleviate my chronic fatigue, lethargy, inability to get my work done, etc. His approach, which I agreed to, was to eliminate all other possibilities before increasing the injections. He then put me on 3 times per week, which helped but the results were erratic. Eventually, following plenty of trial error and much persuasion from me, he agreed that I should try daily injections. In a relatively short time, my improvement was remarkable. I was closer to 'my old self' than I'd been for several years. I am happy to say that has since continued for about two months. On occasions, I have purposefully not taken the injection for a day or two, to monitor the reaction. In each case, my body told me after about 24-hours that I'd 'missed' my injection. Similarly, it takes about 24-hours for the benefits to kick in after I do take an injection.
So, after that long background introduction, my questions are: - Has anybody taken injections on a daily basis for a prolonged period of time? - Is there any evidence of negative effects of taking daily doses for long periods?
Thanks in advance for any guidance you can offer.
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SupportSeekerGiver
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Thanks for sharing you story of how you have come to know that daily B12 injections work best for you. My doctor doesn't believe me, so may take an anonymous screenshot of your story as some kind of proof that I'm not crazy. 😊🙄
Many people on this site have been taking high frequency injections for years to no ill effect. I'm sure they will share their experiences.
Thank you for the prompt informative and supportive response ... and I'm happy to provide you with some 'ammunition' to back up you case with your doctor 😊
The Dutch B12 deficiency foundation has published a paper stating that it’s not possible to overdose on VitaminB12 . I haven’t got the link for it, but one one will probably send it to you . It’s certainly possible with other vitamins . I have a friend who certainly injects once a day and sometimes twice when necessary, and has done so for several years . No ill effects whatsoever . I have injected weekly for 6 years . So , not to worry , inject as often as you need . Some doctors will tell you that too much is toxic . ( mine did ! ). But when you ask how much is too much , and where did the information come from , the subject will be changed . ………….
Thank you. Interesting indeed ....... but I wonder how much that poll would be influenced by how long each person responding had been having B12 injections. In other words, do individual requirements vary as time passes and the condition changes? Or does the pattern seem to stay the same indefinitely?
I have had P.A. for nearly fifty years and I "feel the need" at different times between scheduled injections but am fortunate that "clivealive" can survive on three weekly ones.
Thanks for your swift response ... and for 'being there' and all the good support you have given countless other people. Onwards and upwards we all go together.
I think it varies and depends on whether the individual benefits from other forms of supplementation - speaking as someone who does find that very high dose oral is helpful.
I have muscle pain and restlessness( or in other word panic attack) problem too and I need to take naproxen and probably some medication to fix panic attack( which I'm not sure these kind of medications side effects worth it to take) and both kinds I think affects kidneys and liver negatively. So I decided to inject daily and in liu of taking panic attack medication go out and take fresh air. So it worth it to inject daily. But I hope this pain killer along with B12 doesn't affect my kidney and liver since I inject cyanocobalamin which should converted to other firms of B12 probably in liver( as long as I know) but is more effective than hydroxy form because no antibody can be made for cyanocobalamin form.
I’ve been doing daily injections for 18 months now. Like you I feel if I don’t have one. My main concern is the injection site in my muscles. I swap thighs and try to move around, but I do worry it will have a long term affect on my muscles. Do you use an arm? I have thought about moving to an arm.
My wife has turned herself into an injection expert .... so I have been getting them in the classic area of the upper quarter of the buttocks and I alternate sides each time. So far so good.
I also use subcutaneous sites in the stomach and lower back and just buy different needles for those than from the IM sites. And my partner injects into my upper arm for me.
Hi again Lynxis ..... it's quite bizarre/coincidental that you should send that reply right now. As of yesterday, I started injecting into my thigh because I could only get short short syringe needles. I wasn't too happy about that because of the 'unknown' nature, so once again the timing of your reassuring comment is spot-on. Thank you
Your question has sparked something interesting for me. I inject if honest, when I remember but never longer than a week. I was very poorly back in 2018 with so many symptoms and as soon as I started to inject I found myself getting better.
However, I have had a very bad year mentally and taken to my bed a lot.
You have sparked me to revisit my b12 schedule and inject daily for a while to see if that lifts me.
Thank you for sharing and mich good health to you. Oh and you also reminded me to start eating healthy again as sugar has become my best friend
That's one of the big advantages of this site .... I have learned a lot in recent months just by reading comments, without having posted anything myself until this one, but being prompted to ask yourself more questions has to be good for you. It's THE best way to learn. And in the case of our band of PA warriors, by necessity, we have to learn through trial and error as we go along - so continuously asking questions and self-examining becomes an essential way of life.
Also, take a look at the NICE guidance below on administering hydroxocobalamin. The section on poisoning with cyanides provides for 5g to be administered to an adult across a 15 minute window, then if required a second dose of 5g may be given over 15mins-2hrs depending on severity of poisoning and patient stability.
Regular treatment injections from the NHS are 1mg of B12, so the 5g treatment for cyanide poisoning is 5,000 times greater.
That is very encouraging ...... your first-hand report carries great value, so thanks for replying and sharing . Long may your improvement continue. Best wishes ...
What about taking painkillers like naproxen along with B12 injection. Does it affect kidney or liver? I have restlessness problem too if I take some mental medication does it affect kidneys or liver?
Hello SupportSeekerGiver,It is interesting and reassuring to read your post.
I have been injecting for 11 months now. My gp did not want to give me more than 3 monthly injections. Two weeks after my loading dose my symptoms returned with a vengeance including numbness, burning sensations, tingling etc as well as profound fatigue and brain fog.
So having found this forum I decided to self inject. I have found daily most effective. I still have some mild neurological symptoms (mainly in the soles of my feet) but slowly I have improved and in last couple of months have started to feel like my old self.
Like you I sometimes deliberately missed injections or more recently as I have felt better just forgotten to do them. It takes a day or so but my symptoms get worse and then it can take a few days to a week to get back to where I was before.
My gp says it’s placebo. That b12 injections make everyone feel better. Myself I think it’s probably more likely that the frequent injections are genuinely treating my b12 deficiency than I am having such a significant sustained placebo effect over a period of nearly a year.
Either way as others have said there is strong evidence that it is not harmful and the injections have given me my life back so I am continuing.
Every now and again I do try to reduce the frequency and hope as I improve further I will need injections less frequently.
It has been a long slow process but I think I was deficient for a lot of years so There has been a fair amount of damage.
I am glad your gp has been so supportive for you and I hope you remain well.
Thank you so much for sharing your experiences, which resonate with mine. From my personal perspective, the placebo theory does not stand up. When I become aware that I have 'missed' an injection, it's not because I suddenly realize the date or anything, it's 100% because my body lets me know in a physical way. There's no missing it. So, for now, I will continue with my current daily regime and continue to 'test the waters' every now and then by purposefully not having the injection.
It would probably be great information if people could post what type of B12 they are injecting. The most readily available form in my area is cyanocobalamin, which does contain a very small amount of cyanide. It's certainly not enough to harm a person injecting every week or every month, but I do wonder if there are any long-term effects associated with injecting daily for long periods of time (years). I'm currently doing daily injections as that seems to be necessary to keep my symptoms under control. Like others here, I've tried (either purposefully or by simply forgetting) to decrease the frequency and notice a return of symptoms that doesn't resolve for a few days.
I do SI cyanocobalamin too but my concern is if I take naproxen pain killer and some mental medication for panic attack does it affect kidneys and liver. Because cyanocobalamin should processed in liver but is more effective than hydroxycobal amin because it doesn't get to blood stream directly and no antibody is made for cyanocobalamin but hydroxycobal amin is affected and antibody is made for that since it directly go to blood stream. But there is no liver involvement.
I have been injecting daily for 20 months. I started with loading doses, then tried to go to weekly but just kept increasing the frequency. I was on every other day for 3 months and still having symptoms, so I switched to daily and finally started to feel like myself again. Like others, I have tried to reduce or skip doses, and symptoms return -- my neuropathy quickly comes back, and my quality of life declines. If I consistently inject every day, I feel more "normal" than I have in years.
I injected cyanocobalamin daily for many months and then I got worried about the cyanide issue. (I tested liver and kidney function, which were fine, and my glutathione level, which was high, so I don't really think it was a problem, but I obtained hydroxocobalamin from Germany anyway, just so I wouldn't have to worry about it.) Now I alternate between cyanocobalamin and hydroxocobalamin (both 1 mg/mL), (not necessarily back and forth between them, just depends on what I have on hand) rotating between 2 IM sites (arms) and 6 SQ sites ("back fat" and lower belly). I like the cyanocobalamin because it doesn't burn going in like the hydroxo does. I like the SQ sites because I can use a smaller needle, and they hurt less, and I can do the belly injections myself. (My partner does the other injections for me.)
I keep trying to reduce the frequency because I have (seemingly unfounded) anxiety about long term effects, which is likely a product of the medical community's dire warnings and treating us like we're crazy people. I also have some anxiety about it losing its effectiveness over time. But there is one member here who has been injecting 1.5 mg daily for over 6 years and is still noticing subtle improvements. If I recall, that member started injecting daily after hearing from others who had been injecting daily for 30+ years. So there is certainly plenty of anecdotal evidence about longer term safety. And I can't deny that my body is clearly telling me that it not only works but is necessary for me.
I really appreciate your reply ... comprehensive and concise, supportive and informative, all at the same time. Your detailed testimony is an excellent first-hand account of what many of us are going through. There is a lot for me to draw upon. Thank you 🙏
I'm glad you are feeling better. I know it may have taken some time, and some persuasion from you, to get to where you are now but at least your doctor was willing to work with you to find a solution. I wish all doctors were as understanding as yours.
Thanks for all the info. I am 68 years old. I am taking 1 ml methylcobalamin EOD, if I may ask, how much are you taking daily? Thank you for your time and help.
Hello there RisingOne ..... I take daily doses of 1 mg/L of hydroxocobalamin, injected IM into my upper buttock muscles by my partner. On the rare occasions when we are not together, I self inject the same dose into my thigh muscle with a smaller needle - but I find that to be slightly less effective. Overall, that daily regime is still keeping me in good shape.
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