I'm interested to know how often the average person on this group that self-injects does so.
How often do you self-inject B12? - Pernicious Anaemi...
How often do you self-inject B12?
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Dea11
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I don’t think any of us is average !Also bear in mind that only P.A. patientswho don’t find the treatment that they get from their GP is adequate ( mostly 1 injection every 3 months) come to this forum . I need to inject once a week .
There was a survey done on this by the PAS , and the results can be found as a pie chart somewhere ,
The survey is in the right-hand column -under the heading All Things Pernicious Anaemia Society. "How Often Do You Feel You Actually need Your B12 Injection?"It still exists - but frustratingly I am now unable to view the results.
So no pie chart.
?
Found it, wedgewood and Dea11 !Below the poll, there is a button to click on: view results !
Results appear filled in as if by magic.
Sorry, wedgewood, no longer the beloved pie-chart though.
Depends in where you are with treatment . Where you started What symptoms ect
If everything else ruled out.?
The aim obviously is to get well then z maintenence dose that keeps symptoms at bay.
If is DIY most of the time.
I suggest
Choose a regime. Stick to it and keep a record.
One if my daughters your age has settled on 8- 10 weekly.
If I remember rightly the survey revealed most need monthly.
Some need daily
So it's how long is s peice of string at times
Most important is timing of treatment if a delay in my opinion healing takes longer if delayed.
I personally got alot worse before zny improvements
Age is on your side
Great you've samosa been back to your 'normal ' already
Hi andrea,
I vary from weekly to 2 weekly.
Its difficult to tell, one day I will get up and think that's it I've had enough and inject, sometime works (more often than not) sometimes not.
I notice that you have been on b12 injections for only a couple of months .... I was told that it takes roughly three months (may be longer) for your body to recycle blood
First time I had deficiency it took around 5/6 months before I was able to say I was pretty normal. But as I have got older I have taken longer to bounce back !
(I long for that day
🤪)It's so frustrating keeping that diary will help
Dea11 in reply to
Hi there!Yes, you're right. I've also noticed that. I've had almost 20 injections (I've injected myself) now over the last 2-3 months and I'm only now starting to (dare I say it) feel almost normal.
I was wondering what the average is, to maybe take that information to my GP to show her that there are others like me that feel they might need injections more often than every 3 months.
So thanks for replying to my question- that's really helpful.
Good luck you you. 🙂
in reply to Dea11
When covid appeared its ugly head on the scene, I was refused injections and given tablets, I did have my own supply but limited, I couldn't get more from germany at that time (Brexit) So went down hill, I wrote to the surgery and eventually got them back once a month (March 2021) and manage to get supplies from germany... I would say I have had 40 or 50 in a year, Still work in progress but far better.
Dea11 in reply to
Thanks so much for your reply!
Keep going til all your symptoms no longer improve. I injected every other day for 18 months, I can now sometimes go 3 days, but for me it depends on activity levels. More active = more injections. In Dr Chandy's book they share some early research which shows that some people recycle c90% of their B12 and others v little. I hope eventually there'll be more research. I suspect that all of us are on the lower end of the recycling curve, especially where we are injecting with a high level of frequency. You could buy your GP Dr Chandy's book!
I recently had a need to see a private haemotoligist I know because of this gps stupidity over my need for injections at all.He very kindly did me a letter to the gp stating that I had pernicious anemia and obviously struggled at a cellular level,(functional deficiency,) to fully benefit from injections and therefore needed them to be done regularly “For Life” and levels should not be re tested during treatment.
Next thing I knew I got a text with an appointment for a shot but I never went because when I saw the queues all lined up outside and inside the practice as it was being used as a vaccine centre I chose to continue to do my own self injecting.
Yesterday I had to collect a script for some other meds I needed after the usual online consultation crap,I’ve never even met these gps, they actively discourage appointments , I noticed on my copy script it said 1mg via IM inj every 1-3 months depending on symptoms.I’d no idea that they were prepared to do that because I’ve never been given the opportunity to discuss.p my p.a.or anything else for that matter.
I’m down from every other day to now, 2 years later ,every week but I’m not regular due to my needle phobia constantly kicking in .
Dea11 in reply to
Thanks for your reply!
Hi Andrea
I have absorption problems due to the medications I take. I self inject once every two weeks.
Hi AndreaUK,
So, I’m still on every other day, sometimes once a day and go on my symptoms. I like to be active in the morning but by the afternoon I’m at one with sofa and I have been known to sit on pavements as my legs just give up.
I was pretty poorly like Nackapan and was practically bed bound due to severe vertigo for months. Plus, when I sat up, I’d have to hold myself up due to tremors, when I stood the same, had ataxia and freezing mid stance. Plus, eye tremors, trigeminal neuralgia (excruciating facial pain for months prior to low vitamin B12 level found) and my bladder control- well, dignity goes out of the window.
I was allowed 4 weeks of loading doses, 1 two weeks after that then it was 3 monthly and no Neurology referral. Then, after 4 months, I decided to spend money and saw a lovely private GP, who asked how long have you been like this as I’d been left to it. (Thank goodness for my best friend and silly sense of humour). They and a private neurologist got me admitted pretty promptly to an NHS neurology ward due to my fall risk. Private doctors usually stick to private practice.
Everyone is different, our presenting symptoms aren’t the same, the length of deficiency is different and the rubber stamp of PA is difficult to obtain as tests are unreliable. Functional B12 deficiency, I feel is just as bad as it has numerous causes and cellular activity needs to be taken into account (in my humble opinion).
Best wishes
Thanks for your reply.
Hello! I inject once per week and have been on this schedule for about two years now. I had been injecting once every other week prior to that but I was never able to fully recover and be asymptomatic on that frequency. I am asymptomatic on a weekly schedule but I haven’t been able to cut back because by the time a week rolls around, I really feel like I’m in need of an injection. It’s almost as if I feel a little off, maybe even a little tired. I self inject and notice a difference 48 hours later. This doesn’t happen every week but it does happen and that’s why I’m not in any hurry to reduce injection frequency. Would love to be one of those people who can get by with monthly injections but unfortunately that doesn’t seem to be in the cards for me. An injection once every 3 months is completely out of the question for me. I did that once and became very sick. Never again.
Thanks so much for your reply. 👍. Do you order your own B12 or does your GP prescribe it?
I use the Actavis 30ml multi-dose vial (30 1ml doses) of hydroxocobalamin prescribed by my doctor that I discard after 28 days. I am in the US, where the standard frequency is one injection per month. It was kind of trial and error that resulted in the once weekly injection cycle. I had been on that frequency in the beginning but was cut back to every other week too soon based on over 2000 b12 levels. Though in reality, since. I use a 30 dose multi use vial, I could’ve increased frequency of injections anytime. I am a rule follower but once I got worse after getting better, I upped the injections from once every two weeks to once weekly on a hunch. When I saw my doctor again I told her I got better on the weekly shots and her response was well that proved you need more frequent injections. She would eventually like to see me spread out the injections more like once every 10days but I haven’t been able to do that yet.
I am very lucky to have a caring doctor who listens to me and who took the time to do the research. I am her only PA patient and I think she and I both have learned and are still learning a lot about the condition. Best of luck to you in your recovery. It has taken years for me to get where I am today.
Hi Andrea,I'm just coming up to 7 years' of daily injections. I need 1.5mg hydroxocobalamin every day due to various gut issues.
I know of several people who inject twice a day and one of them, an ex-midwife who sustained a lot of damage from her B12 deficiency, uses the same extra strength ampoules as me for both her jabs to continue her healing at least 5 years later.
If we need it, we need it!
And plenty of supporting supplements, alongside an excellent diet.
Hi there. Thanks so much for your reply! Wow- I might then still continue to recover for years to come because my symptoms started 5 years ago, even though they were minor. I guess if symptoms took 5 years to develop they might take 5 years to recover!
Easily - I'm still getting improvements, despite other issues throwing spanners in the works!
The bulk of the improvements take about 6 months, with significant improvements in nerve function still happening at 18 months.
It was 2 and a half years before I was able to start to speak fluently again and now I can almost always talk without thinking about it.
It took about the same time for my balance and proprioception to come back but I'm definitely much better now than I was even then.
I get less neuropathy now than I did even a year ago - although that is probably in part due to more stable better levels of potassium for me.
Never give up trying to get better!
Amazing. Thanks so much! I still can't believe that I've found a diagnosis for this 5 year problem, finally! Even though my GP is still not onboard and this week refused to prescribe lifelong injections, I will not give up getting better and I'm pushing for a repeat prescription. Otherwise I'll need to get injections from Germany.
I totally agree.
I also carry Spatone (liquid iron with vitamin C) with me.
how often you'd check your ferritn level?
Hi mo2march,
I last had it checked October - it was 53 and I was struggling on that. I feel it’s an arbitrary figure and will always go on symptoms.
I’m from a medical family and sorry, I’m unwilling to share my background on here but know IDA (iron deficiency anaemia) pretty ok.
Best wishes
I learned that optimum level if iron is between 45 and 75. Any thing beyond that cause trouble. Along with injection it's mandatory to take iron pills on and off but that margin should be kept quite firm. That's why it's required to check feritin level on and off.
Thank you.
Weekly now. Monthly was just about doable, but why struggle when you have enough ampoules for four years at that rate, but they will be out of date before you have used half of them? 💉💉💉💉🕚
Hi AndreaUK. I’m SI every other day at the moment. I’m really getting through my ampoules, but I definitely need them atm. Whilst I’m here, I can’t remember who recommended the ‘snap it’ tool the other day (possibly Wedgewood who gives out great advice) but they are a game changer! They snap the ampoules so easily! One word of warning though, don’t eject the broken off bit into your hand! It comes out fast! Make sure the ‘snap it’ tool is over your sharps bin before ejecting it! They’re about £22 and worth every penny.
Dea11 in reply to
Thanks so much for your reply. I've searched for that snapit tool to see how it works, but I'm actually managing to open the ampules myself without that tool 👍. I cut myself once but not again 👍
I will tell you why I like that metal ampoule snapper so much , apart from the fact that it does prevent cut accidents . For years I opened the ampoule by hand first wrapping the ampoule in a swab . But often the ampoule broke making tiny shards of glass , sone of which i thought could end up in the ampoule before being sucked up into the syringe , then maybe into me ! Using the ampoule snapper , the break is absolutely clean without making any shards. A decided advantage I thought .
Also useful for folk with arthritis etc .
You can of course buy blunt withdrawing needles that have a filter . Quite expensive and not always obtainable .
mo2march in reply to
there is a white dot on the neck of ampoule and on its opposite side there is a scratch which can be sensed by your nail. Keep that scratch on your side and dot on farther side then on above two lines over ampoule neck keep your finger pressure on there. You can use and unwoven cotton swab soaked with alcohol and wrap ampoule in that. Just by a little pressure it can be snapped
in reply to mo2march
Hi. Thank you. Yes, I’ve been opening the ampoules like that for nearly 3 years, but the snap it tool is much easier than doing it by hand 
Morning Andrea- I was diagnosed less than a year ago with dietary B12 efficiency by GP and prescribed standard treatment of 6 loading does and 3 monthly injections for life thereafter. I was lucky in comparison to some but treatment offered woefully inadequate. Never even heard of B12 before ……… Following the wonderful Wedgwood’s advice, I ordered ampoules from Versepol in Germany and needles from medisave in UK. I now inject once a week but still have tingling hands and feet and my balance isn’t too good. However it does seem to take a long time to improve and once a week seems about average for those on this site who can function reasonably well but have some neurological symptoms. Hope this helps. I am learning all the time. Last week, I bought expensive blue ampoule snapper as recommended by Wedgwood. Worth every penny!
If you increase frequency for sure your symptoms get improve much faster. I was in a very bad situation I felt I'm dying. I couldn't find any knowledgeable GP and after couple of months taking b12 in low dose then started injection but my symptoms got much worsened then I managed to raise frequency and now I inject everyday with lots of oral b12 slow release.
Thank you. I will follow your advice and take a shot this morning! I do so appreciate this site. I do not know where I would be without it 😍
I was on roughly once a week to once every two weeks. Got covid two weeks ago and now back to every other day.
It's interesting that you say that! I only found out that I have PA in January this year. My PA related symptoms were always terrible after I got sick. I never had Covid, but even after a small stomach bug in December made me feel terrible for a week afterwards and the PA symptoms never got back to the way they were before the bug, until a week ago when the effects of the B12 injections finally kicked in!
After second dose of covid vaccine I was in all pain for days
Once a month as GP refused to give more frequently than two monthly 😀
Hi AndreaUKI self inject every day otherwise my symptoms impact my quality of life. It's taken me 20+ years to reach this point - no pun intended!
Good luck in discussions with your GP. I hope that you secure the treatment you need in order to feel well. 🤞
Hi AndreaUK,
I am in the US. Now that I am diagnosed, I can see that I had symptoms by 2008. I began experiencing vertigo and balance problems in general about 2016, and was diagnosed in the spring of 2021. I read a lot, but nothing was more helpful than an article (suggested by Sleepybunny) entitled "The Many Faces of Cobalamin (B12) Deficiency", by physicians/researchers in the Netherlands and published by the Mayo Clinic Proceedings. This article states that there seem to be two separate populations of B12 deficiency patients: those with primarily blood symptoms, and those with primarily neural symptoms. Those who have blood symptoms tend to be easily treated and symptoms resolve readily. This group responds well to the protocol doctors seem familiar with: daily injections for a week or two, weekly injections for a month or two, then injections monthly, or every two months, or even every three months. The patients with neural symptoms, according to the article, generally need two injections per week for two years, at which point improvement needs to be reviewed. This is similar to the guidelines in the UK, I am told on this forum, though the documents referred to will not allow access to people who are not in the UK.
The two separate, distinct populations of B12 deficiency patients seems to be the part that confused most physicians, who seem to want to treat both populations of patients with the protocol appropriate only for patients with blood symptoms. That's what happened to me. After improving rapidly on daily injections, I was moved to less frequent injections and my symptoms were exacerbated, to a point much more severe than they had been at diagnosis. Citing the article I mentioned earlier, I requested a return to daily injections. My GP was grumpy but went along, and I have been self-injecting daily since. I believe my balance and related symptoms are still slowly improving, and hope that recurring brain fog will continue to improve. Research on treatment of B12 deficiency is nearly all of poor quality, but after looking at many research articles, it seemed clear to me that study subjects who were administered more B12 injections did better than patients who received fewer injections, and people who received injections more frequently do better than people who inject less frequently. Hence my request to return to daily injections. Also, though the authors of the article mentioned above quite thoroughly go into the topic of oral doses of B12, and caution against oral doses in place of injections, I take daily doses of 10,000 mcg oral methylcobalamin B12, hoping for some passively absorption.
Hi! Thanks for your reply and that info. I've read that article and am about to drop it off for my GP to read, but I feel like she might just chuck it in the bin...but it's worth a try!
I suggest highlighting the parts of the article you think are most crucial for your GP to know, eg, the two populations of patients with B12 deficiency, and the treatment recommendation for each population. Your might also highlight the heading of the box with the common physician misunderstandings regarding B12 deficiency, and one or two items that you feel are most relevant. If you think your GP doesn't understand the range of symptoms, maybe highlight that heading too. I suggest avoiding big blocks of highlighting. Good luck!
Thanks! That's actually exactly what I did. I specifically dropped off the articles to show that it's possible to have PA without vitB12 blood test levels being, and without having anemia in blood tests because I don't even have an official diagnosis yet. I added a letter that says that I feel like they don't believe me when I say I have symptoms that affect my entire life. I don't know if it'll even be looked at its worth a try.
You mentioned earlier that you are considering finding a doctor who operates a bit closer to your wavelength. I think, as you probably did, that it's only fair to let them know that you are unhappy with the services you are receiving. If they are unable to correct the problem, you can feel a bit better about moving on, with the very reasonable goal of getting better assistance elsewhere. Again, good luck!
After years of trial and error without finding a lot of relief, I started twice a day injections about six months ago. I use 1000 mcg hydroxo in the AM and 1000 mcg cyano in the late afternoon. I have many comorbidities so it is often hard to tell which symptoms go with what but finally about a month ago I started to feel as if a veil was being lifted and I could actually tell some things were getting better. I have a Doctor that supports my decisions and acknowledges my extensive medical imaging and laboratory background and works with me in a collaborative method. I am not sure how long I will stay with this protocol, but at least until I can no longer see improvements. I do not recommend that everyone jump on a two a day protocol without consultation and support, which I know is very hard to find. But if you have been SI for some time without improvement and have access to supplies, it is something to consider. I went undiagnosed and untreated for many years before atrophic gastritis was confirmed.
Thanks for your message . Wow! Tell us the secret to your success with your Doctor😆- My doctor doesn't even want to prescribe me 3 monthly injections!
The Secret... find another doctor : ) I'm not sure how easy that is in the UK but here in the US it can be quite easy depending on insurance. I actually went through 14 doctors in 2020 just trying to get diagnosed with PA and then treated properly. I have now finally found a great integrative medicine doctor who is more partner than arrogant doctor. I take my research to her, we discuss, and then decide on treatment. I now self-inject 2,000mcg weekly of methylcobalamin.
Amazing! I'm glad you found a good one that is willing to have discussions with you. I understand it's difficult to diagnose this condition, but all I want is for a health professional to acknowledge my symptoms and at least try to help me, or at least direct me to someone that might be able to. That's it! But instead I just get told my symptoms are 'psychological'. Anyway, I think I'll find another GP. Thanks, and all the best.
One more thing and then I'll stop complaining 😁. The worst part for me is that I'm a health professional myself. I'm a physiotherapist and have been for 10 years. I deal with patients daily and I always try listen to patients and legitimize their illness experience no matter what. If it matters to the patient it needs to matter to me. And if I know I'm not the right person to deal with a specific patients issues then I acknowledge that and then I'll do my best to find someone else that can help them better than I can. And I will be honest with the patient and have open discussions about their situation, and I'll be open to what the patient's brings to the table. Luckily your GP does this too- they were a good find!
You patients are lucky!! It's such an asset you are able to empathize with them, even though it's not ideal you have PA.
I know 🤦🏼♀️. I wasn't able to work for 2 months. Then I had to work again because we needed the money, so I started a new job 1 month ago. My supervisor is amazing, and understands my situation and is open to me pacing myself etc. But some days on my commute to work I feel like I won't be able to get through the day. I guess all I can do, and all that all of us seem to do, is take it one day at a time 💪🏻
You are doing such a great job advocating for yourself, I am totally with you about 1 day at a time.
I was badly injured while working and I've been struggling to get well enough to go back. In one sense, it was sort of a blessing in that getting injured probably exposed my B12 issues/PA much earlier than if I had just kept gradually declining, but it has been an extremely nerve wracking couple of years. I feel so blessed to have a supportive fiance. You are a warrior, I'm inspired by your strong will and bravery!
in reply to Dea11
I went to physio last year, we were talking about b12 and her friend also a physio has to inject herself with b12 from germany to be able to keep working. NHS will not increase her 3 monthly injection either.
If only we could purchase it in this country !
No arguments and no stress
Dea11 in reply to
I know! How great would that be. I think I'll also need to order from Germany.
I tried cyano and hydroxo combination but I found that they can't get matched because cyano onset action is much slower than hydroxo and when I inject cyano then later hydroxo actually worsen my symptoms because of too much b12 at the same time. I think it would be better to have a week whole days hydroxo and next week whole week cyano
I now am down to every three weeks but from watching this forum there are people so much worse off than me.
AndreaUK thank you for starting this wonderful thread! I'm feeling really uplifted and hopeful reading all these great replies!! I'm doing every other day cyano, varying between 500-1,00mcg. I seem to need more closer to my period and if I'm stressed. I also just found out I have celiac and I did a 'gluten challenge' for 5 weeks which really taxed my body. By the end of it, I seemed to want 1,000 mcg more consistently, whereas before I was doing pretty well with 500 mcg.
I'm only about 3-4 months into my treatment. I started with less frequent injections, but found moving them closer together seems to help smooth out some of my big reactions to B12 dipping.
Yeah- there have been so many replies! 😁. Thanks for that info, I might try do that too!
Play around, experiment! Wishing you the best!
I will 👍. Thank you!
I think it depends on your symptoms type and how do you feel after sticking to a regime of injection. No one can say how much is enough. Personally my symptoms are so bad and I need to inject every day along with taking high dose of b12 orally in slow release form. Now I see some improvement and may I reduce my injection frequency but all of us are different and one rule doesn't fit all. After sticking to regime then takes a while to see symptoms improvement it depends for how long symptoms were left untreated and what is the extent of symptoms severity. If its less than one year it take at least six weeks to see improvement according to dutch research group, and if it more than five years it takes at least six to eight months to see any improvement. If more muscles are involved its required to take b12 in other ways too in order to raise tolerance like nasal spray if the person can't absorb orally and if can absorb orally high dose of slow release or liquid b12 in water should be sipped whole day long.
Every day for me (for the last four years - every other day before that)
2-3 times a week for my sister
6 monthly for my other sister
2-3 monthly for my mother
Hi Andrea your thread has been really interesting. We are all different. It's sad to read how people are treated. I am a retired nurse and have found it really difficult to get more frequent b12 injections and being told not to focus on it as its mainly placebo effect!! Consequently I don't go back to the gp as I believe that they think it is all in my head.Take care and best wishes
Thank you for your reply. I agree- I didn't think people's injection frequencies would vary so much, so it's really interesting!Sorry to hear about your bad experiences, it's really unfair. I would have hoped that you, as a retired mecial professional, would have been treated with a little more respect. All the best to you!
Thanks Andrea. I always feel I shouldn't make a fuss! It's easier being someone else 's advocate rather than your own!
I know, standing up for yourself is easier said that done!
in reply to Dea11
The biggest problem is doctors are really clueless about b12 deficiency. We are all here and can understand each others suffering and can bat and ball with each other suggesting things that might help, even the fact of someone actually listening to each of us . Instead doctors dismiss us and unwilling to investigate more.I also think that we also have that fear of stepping too hard on there toes and the responses we might encounter.
Dea11 in reply to
I agree with 100% of what you just said! I took a scientific research article to my GP this week about the experiences of patients diagnosed with PA in the UK, so that my GP can understand that the way most of us are dealt with makes us feel like they don't believe us and that we don't matter. The researchers interview 8 or so people from the PA Society and got their thought about how their diagnosis/treatment etc was handled. Everything in the article resonated with me. I can share the link to the article if you would like.
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