How to tell when to stop the alternate day injections?

[Schenks]

Hello folks, I wonder if I can have some opinions to ponder, please?

I've been injecting on alternate days since 25th August, alternate days, until last Tuesday 20th September, which was my 14th alternate day injection. I have noticed an improvement, for example the numbness in my left hand is now confined to tingling in my fourth and fifth fingers with a bit of altered feeling/slight numbness; I have had increased alertness and I have noticed that I am more dexterous (can put on a fiddly pair of earrings which defeated me before), am more alert, can read a book (last couple of days - it's been a long time since I had any concentration span), and seem to have more energy although the years of disabling exhaustion have left me with zero stamina, so I tire easily and often need to sleep during the day from over-doing it, a trait I am honestly trying to regulate. I don't stumble as much and when feeling my way to the loo in the middle of the night I don't lose my balance anything like as badly. I'm not as forgetful - I remember what it is I've forgotten before going downstairs/upstairs/out of the house more regularly,and several more improvements I don't want to bore you with.

I stopped the injections last /Tuesday because I have been on them for 3 1/2 weeks and Dr C said to do it for 2-3 weeks - and that I'll get to judge when to re-inject; every one or two weeks or so. But I'm not sure. I have read that for severe neurological symptoms you need to inject indefinitely or until the condition stops improving.

My question is, how do you know when you stop improving? Improvements are so gradual that it's hard to tell. Also, with this re-awakening of the systems, so to speak (I forget the term Dr C used for it - anyone know?) one can feel worse before feeling better. But the symptoms are so variable and interconnected - I'm finding it hard to discern what's going on.

For example, I'm feeling rather down; I know this is contributed towards by my situation (complex, but in a nutshell, married to a lovely man but living amongst ignorant, pugnacious, loutish people, and also feeling unable to try to work again at the moment, so very frustrated), but my mood is still unstable - especially since stopping the injections and I still react badly physically to stress. I'm waking up very early (e.g. 5am) and that is fed-up making, I get incredibly hot in the early hours, my lungs are 'chesty' again, the pain in my neck and shoulders has increased, and the parasthesia in my left hand has increased again.

My concern is that I don't really know what constitutes severe neurological damage/symptoms. Dr C told me that I was exhibiting serious problems but of course, not seeing me, he could not say how serious other than to advise me to inject B12. So should I resume injecting on alternate days and how on earth do I know when to stop? I mean, surely the effects are cumulative and if I am damaged by prolonged B12 deficiency over all these years, than might it not take months to get better? And if so, is it ok to keep alternate day injecting for months?

I feel a bit lost in it all. And it's not the most pleasant of treatments, I have to say. I'm really not used to it yet!

Hope all that makes sense - I've been up since 5! (going to try and have a snooze now!!

[clivealive Forum Support]

Hi Schenks How long is a piece of string?

I'm not a medically trained person and there are others on here who can give good advice but no two people are the same and improvement in symptoms can depend on how long the damage has been going on.

I guess you could make a list of all your symptoms and mark each one out of a score of one to ten how severe or otherwise they are each day. This way you will be able to monitor your progress.

Sadly there is no guarantee that every symptom will be "healed" and others may take years so you may need a big piece of paper.

You cannot overdose on B12 - it is not toxic and what your body does not need is excreted in the urine.

I hope you had a great snooze and awaken refreshed zzzzzzzzz zzzzzzzzzz

I wish you well

[Schenks in reply to clivealive]

Thank you for your help. Clive. It is a piece of string job, you're right. I think scoring the symptoms is a great idea. Hadn't thought of that. I kept a kind of list but it didn't occur to me to score it - what a dodo! Thanks for the suggestion, will be doing just that. 😉

[Sleepybunny]

Hi,

Hope you find answers. There might be some useful info in third pinned post on forum.

It took months of treatment for me to show improvements. Some people seem to need huge amounts of b12 to keep symptoms at bay but others are fine on standard treatment.

[Gambit62 Administrator]

All you can do is monitor the symptoms - yes improvements can be slow but if you are still noticing improvments then continue. You can also try stopping and seeing if symptoms come back and when they start to creep back that is when you inject again.

[Schenks in reply to Gambit62]

I think I worry at myself like a bad tempered sheep dog, because from stopping the injections last Tuesday, I have been absolutely experiencing a return of several symptoms but I find it difficult to take myself seriously. On writing this, it occurs to me that I have been well trained by bl**dy doctors to perceive myself as a heartsink patient (as admitted to me by my GP) and therefore tell myself off for not ignoring symptoms as I have done for so many years.

Maybe if I had've taken note years ago, I might not be in such a s**ding mess now!

As a result of everyone's advice on here. I injected this morning and already feel less low, less anxious and the paraesthesia in my left 4th and 5th fingers is noticeably reduced.

So I'm going to stop calling myself out and keep up with alternate days for as long as the piece of string plays out.

Thanks for taking the trouble to respond to me, it's giving me heart. x

[Booksellercate]

Hello,

I've heard from people who are still seeing improvements 1, 2 and even 3 years on. If symptoms are severe or have been going on for some time it's believed it can take a number of months before significant improvements are felt.

If injections are helping, personally I would continue if you are able.

Good luck

[Schenks in reply to Booksellercate]

Thank you so much for this, Booksie, you've given me reassurance and also courage to continue with alternate days. I guess I'm so used to playing down the symptoms that I needed that reassurance to stick to my guns. 😓

[deniseinmilden]

Hi!

I'd keep going as you are for now - until you feel consistently well. Over a year on I'm still taking 1.5 mg hydroxocobalamin daily and still improving. There are lots of others who have been on daily jabs for years. If you need it, you need it.

Don't forget to take all the supporting supplements that are required to make the extra B12 work.

When you reach a point where you feel you are fine and that you really don't need a jab every other day, why not try one every 3 days for a few weeks? If that's OK you can gradually reduce the interval again.

I would suggest you are cautious about dropping it too quickly as there will be a lot of "behind the scenes" damage repair going on and last spring I got very bad whenever my jabs were cut out (due to Drs). I think I may not need so much now if the treatment had been introduced and reduced more slowly. It felt like my body couldn't cope with the degree of variation of supply.

Above all... Believe in yourself!!!

You have got where you are because of you so give yourself credit and know that the best person to decide what's working for you... is YOU! No-one is so dependant on you feeling well as you are so you are likely to have your best interests at heart!! 😁 xx

[Schenks in reply to deniseinmilden]

Golly, that's an eye-opener...you inject daily? how come you were so brave to start that in the first place? i mean, we are told every other day and it must have taken some guts to self administer a daily jab.

Also, how did you know to inject 1.5mg a day? But it makes sense. I honestly thought it was a placebo effect, but on the intermediate days of not injecting i really don't feel as good as the day of the injection, but again, I've put it down to mind-tricks.

you know, the one thing that has been damaged in all of this is trust in myself - I've just realised that from what you've written. I have to trust in myself. And i am really encouraged by the "behind the scenes repair" - thank you. I'm going for it. I'm going to stick with alternate days, but this week i have ma monthly injection as the second of my 'trial' of three one-per-month injections as suggested by a consultant. The day of that injection will follow my own, so I'll be able to see if a daily injection actually makes a difference.

you know, as I type this, I already have a sneaky suspicion that it will and that I could probably do with a daily injection. But it's a bit of a fear of becoming a 'B12 junkie', so aptly put by ndodge below! But I also find injecting a bit of a aaaarghhh!-type activity, so I'm reluctant to think of daily, but I'm going to see how i go and if I can countenance a daily freak!

Thanks, Denise! x

[ndodge]

Hi Schenks,

I self inject, or rather my husband does the injecting, every other day. This week I tried to go with 2 days in between and the fatigue came back, big time. Also my tinnitus goes away after an injection then creeps back.

When my ears get loud enough to make me crazy, I know it's time for another shot. Which is every other day! It's my own personal alarm clock or my early warning system, if you will.

I'm going to keep up the injections every other day for a very long time if need be because I feel so much better at that rate.

I have been worried about being a B12 junkie but I'm over that. Now I just accept that I need a lot of b12.

So go for it and try to accept for the time being that you need what you need!

[Schenks]

Hi, ndodge (I think I just got the monicker! very clever ), and thanks again for another reply.

I'm grateful for the encouragement - and I can so identify with worrying about becoming a B12 junkie! I think it feeds in to the general head-chattter that I'm malingering/hypochondriacal/neurotic and so on and on and on ...

I get more tired the day after an injection than the day of the injection and yet I tell myself that it is just a placebo effect because the accepted rate of injecting is alternate days. When did I become so mistrusting of my own bl**dy senses?

I need a lot of B12. I must have needed it for years and years (I've been so used to tinnitus since childhood, it's scary) and I guess i have to accept the fact that, although I can''t see it, the repair is gradual but persistent. So I am going to keep on and I'm also going to monitor the in-between days, to see if a daily injection would be better. God help me!

X

[ndodge in reply to Schenks]

Hi Schenks,

You are very welcome! Another thought...maybe our kidneys are very efficient at eliminating the B12 as Gambit62 and fbirder have written about. That makes me feel better to think that might be why I need so much.

What helps me between injections is Superior Source "No Shot" methyl lozenges, 10,000 mcgs.Yes, that's ten thousand!

I can do 2-4 of these and it gets me through until the next day when I inject.

You can get them on Amazon or Swansons Vitamins which is an international company.

Keep up the good work!

xx

Nancy

[Schenks in reply to ndodge]

Thanks ndodge - actually, there is something in that; I know that I have very efficient kidneys, so I'm looking into the oral supplements. Anything not to inject daily! Will keep you posted. 😟 (That one looks constipated! Apt!)

[ndodge in reply to Schenks]

I find supplementation with sublinguals, esp. the 10,000mcgs does help-

Good luck and yes let me know if they work for you!

[Schenks in reply to ndodge]

X will do. 😬

[ndodge in reply to Schenks]

😬 This one looks constipated and a little bit rabid!

[Schenks in reply to ndodge]

Lol!

[B12jab in reply to Schenks]

Hi I’ve just come across your post! Like you were I see this is an old post I’m in the dirt your were I can’t get my head around the self injections which I’ve had 17 alternate days now I’m not sure when to stop and I feel afraid.l slightly of having them long term although I know you can’t overdose I just feel long term can it cause any other problems,my b12 has been under 300 for years and I this past year have felt awful had b12 checked and noticed it was 280,I shared my results with a b12 group and also spoke to dr C who said I needed to be on injections,can I ask how low your b12 was and what was the outcome of your length of time on alternate day injections,it’s some comfort to know il not alone in feeling like this x

[Schenks in reply to B12jab]

Hi B12jab. It was a couple of years ago when I started, so I don't recall how low my count was and my harddrive, with the info on it, crashed and needed to be replaced a few months ago and all the info was lost (not backed-up!). But it was not that much above 300, if at all. Anyway, I was on alternate day injections for at least 6 weeks or so, perhaps a bit more, as I recall. You can't overdose according to Dr C, so I wasn't worried, but it took several months before I felt that the symptoms had stabilised. I'm not sure I understand you when you say you are afraid long term can it cause other problems; do you mean long term injecting or long term B12 deficiency? Also long term is a measure that can mean anything - weeks or months.

I injected on alternate days for as long as it took to stop feeling awful, which is the advice of Dr C. The usual timeframe is about three weeks or until the patient begins to feel better, so I went way over three weeks because, as the advice goes, you keep on until the symptoms are noticably improving.

My feeling bad got worse at the start of injecting and for the first two or three weeks - this is a good sign and is called 'reversing-out syndrome', when the bodily systems starved of B12 begin to 'come alive' again; a bit like a baby's mobile, when one ornament is pulled and the whole mobile starts rocking, so when each body system begins to regulate all the others must adapt. This often means the patient feels much worse at the start of the treatment.

You need to remember also that your thinking problems, feeling anxious, not being able to think things through very well are very much part of B12 deficiency (although you need to make sure you are checked-out and doctors are confident nothing else is going on).

Don't worry about continuing the injections for as long as it takes to notice the symptoms are beginning to stabilise. When this happened to me, I reduced the injections to once every three days for a while, then twice a week, once a week, a fortnight and then monthly. I got so much relief that I started to not have them at all and some of the symptoms have crept back, so I'm happily on alternate days again until I feel ok enough to reduce the number of injections.

Between injections I take very high doses of B12 in sublingual drops as well as B12 complex with folate - helps absorb the B12. B12 is highly water soluble and is easily excreted from the kidneys, so you're not damaging yourself by continuing. Dr C told me that the treatment for carbon monoxide poisoning is B12injections of 5000mg repeated until the patient regains consciousness. It's a safe supplement - and you'll know when you feel a little less crappy and think it ok to reduce the number of injections.

Hope this helps and you begin to notice an improvement soon. You will, I'm sure.

[B12jab in reply to Schenks]

Ahh bless you thanks for replying I didn’t think I would as your post was a couple of years back! Yes I agree il talk to dr C again and see what he advise for me it’s like I need the reassurance of a health Professionals That what I’m doing is safe and right,but I won’t get that as my b12 was within range at 280,I’m going to pay privately for a full thyroid panel to rule that out and my doctor has referred me to a neurologist,even tho my dizziness fuzzy head is a lot better,it’s the crushing faring no energy that’s just too much,I’ve had 12 alternate day injections now I’ll carry on but it is a worry isn’t it all this self treating it really is! Thanks again il let you know how I get on xx

[Schenks in reply to B12jab]

you're most welcome. By the way, don't get hung up on the thyroid panel - it's a minefield!

[Harvena]

Schenks, thanks for raising this question, it is something that I have been wondering about for a couple of weeks, complicated by the fact that I have a Primary Immunodeficiency and although been diagnosed with PA for 16 years a load of the symptoms are common to both conditions. I will find and print off the PAS symptoms list, make a list specific to my symptoms and score it as suggested by Clive. I have tried making a note in my diary, but it is too easy to forget to do it, or not register some of the symptoms. (I am currently injecting SC every other day, but splitting the dose into two. )

Thank you everyone for all the support for each other and the great information and ideas.

[Schenks in reply to Harvena]

hi, Harvena - thanks for the support. That's a good idea, to print off the PA symptom list and make a self-specific list; it simplifies it. going to do that.

I'm splitting the dose in two also, but it's not getting any easier. If anything, I'm getting more tickly-footed, where the soles of my feet feel like they are just about to get pins and needles from wound-upness! And i had me first drop of blood as the needle came out last night. the stress of that made me feel i needed more B12....

Don't tell me you inject IM ...? I cannot even think of it.

[Harvena in reply to Schenks]

Oh my goodness NO, there is no way that I could currently to IM!, for a start the only place that I could manage is my thighs, I am too much of a coward too. Fortunately I have no problem in doing SC into top of thighs, or outside (sort of) of hips, as I save my tummy fat (the only place I have any fat LOL) for my two infusion sites each week for the immune replacement therapy, these are 23g needles and I manage mind over matter each week to do it, TBH it doesn't hurt once the needle has pierced the skin and that is only for a nano second. I have drawn blood (just a spot or two) a few times, but I did so much reading on the PA thread on FB before I plucked up courage that I knew not to be concerned. Keep taking a deep breath and doing the SCs, I am sure it will pay off for you.

[Schenks in reply to Harvena]

By the way - the only place you have any fat is your TUMMY? I hate you! I'd need a six inch bl***y needle to get through the fat on my thighs!

[Harvena in reply to Schenks]

LOL, I think I was probably designed by a committee!, 5ft 4 tall, the skinniest legs, arms and butt you ever did see, an hourglass figure (very generous boobs) and a very "rounded" tummy, I have been mistaken for being pregnant many times, and never got around to it ever! Always had to buy long jumpers and jackets as even when I bought trousers to fit waist and hips they were always baggy arrised on me. I was a happy size 12/14 until 18 months ago and the combination of 3 medical conditons has meant that the weight has fallen off me, little appetite and struggling to not go under 7 stone 6 llbs. I don't like being this low, but the worst is having no muscle tone and no energy, but hey ho many suffering far worse than me. Hence trialling extra B12 (get 8 weekly from GP's) which was fine for years.

We will just keep on jabbing and WE WILL get better.

[Schenks in reply to Harvena]

Isn't it weird that I still have a teensy bit of envy at your not wanting to get below 7st something?! No, I lie. I'm effing jealous. And what's worse, I'm a similar height and you are s**ding STONES lighter than me. And we're talking about illness here - how dick can you get, no pun intended! And you get eight injections a week from your GP?

You know, I'm really sick in the head if that makes me a bit envious. I guess I need something else for that. Blow, maybe.... No, only joking. Or am I?....

Yep, going nuts...

😱

[Schenks in reply to Schenks]

P.s. Predictive text can be rather interesting. That reads dick ... I actually wrote sick! Hmm....

[Harvena in reply to Schenks]

Predictive test is a PITA, I hate writing anything on my tablet.

[Harvena in reply to Schenks]

LOL, I meant 1 injection every 8 weeks! As a size 12/14 I looked good and was often told that I looked 10 years younger than my true age (now 67). Now my upper arms look like those of a 90 year old and as I have taken good care of my facial skin care my face is not as gaunt as it might be, but I now look tired and wrinkly and down right old. I wear make up and dress well, but for me the worst is not having any energy and not being able to walk or ride my electric bike as leisure activities.

I will trade some of your pounds for a little of my scraginess tee hee.....

[Schenks in reply to Harvena]

Hmm. I'm not sure whether to say eff off, size 12 or .... Nope. Eff off size 12 wins. Along with 10 years younger. No sympathy for the arms - mine have been trunks forever. 😁

[Schenks]

I think you are incredible! Infusions? Good grief, girl!

Will keep on going: if you can, so can I! Thanks.😫

[Polaris]

I think the results in this survey are interesting Schenks, especially

"The need for quick and correct treatment is emphasised further by the fact that after a year of treatment only 4 % of patients are fully recovered. Fortunately half of the patients have experienced a lot of improvement in their symptoms after a year of treatment but there are still a lot of patients with remaining symptoms, who could possibly have recovered if their treatment was started promptly and adequately. "

stichtingb12tekort.nl/surve...

[Schenks in reply to Polaris]

Thank you so much for your response, Polaris. This is both a comfort and an aggravation. It's a comfort because it substantiates my belief, mainly that I have been misdiagnosed for years and that at last I am being treated appropriately, even though it's by me! But the aggravation is that I may well have incurred lasting damage.

Still, I'm a fighter and I'm determined to recover everything that has been robbed of me by ignorant, entrenched, arrogant, omnipotent f***** doctors.

And this isn't half ammo, when please God I publish!

X

😷

[Polaris in reply to Schenks]

Glad you're not discouraged or giving up Schenks and hope you continue to make progress 🤗

Having seen my sister misdiagnosed for years, I'm certain that the key is sufficient treatment but it must be very difficult to know how often to inject with the vagaries of the disease and when progress is so slow and subtle.

Very best wishes x

[Schenks in reply to Polaris]

Thank you so much. Wouldn't it be wonderful if doctors were as supportive, caring and knowledgeable as the members of these forums? Gives me heart.

x