Advice about frequency of injections

[Emmers5]

Looking for advice about how frequently to inject. I was diagnosed with PA in 2017, severely ill, including significant neurological symptoms. Under treated and soooo sick for a few more years, eventually felt well on injections every 5 days. This forum really helped me regain my health. Y'all are wonderful and brilliant. Now I wonder if I still really need injections that frequently? I have tried stretching to every 7 days and I feel awful, but I don't know if I am just being a hypochondriac. I get very emotional and irrational, mild panic attacks, maybe a bit fatigued. Hate injecting so often, but so afraid to get unwell again. Is this all in my head?

[Nackapan]

Keep going on the regime that works for you .I was also very very ill in 2018 .

I'm functioning much better now .

Left with symotons I manage .

Still slow improvements.

I need to inject 6-7 days.

I've often thought do I need this many now?

A sure sign I'm doing much better

Then i lookback in my diary ,or have a bad day !

When under pressure from doctors to reduce frequency I tried b12 tablets.

Did nothing.

The longest j went was 5 weeks after loading doses as supposed to wait 3 months

Then 3 yrsrs later 3 weeks three times.

A mistake as on catch up then.

For some reason despite being ill i thought.

Monthly was a good aim as alot of opposition from nurses and doctors and it simply didn't make sense to me still needing so many .

I eas on EOD for about 7 months after the 5 week gap prescribed .

I'm presently prescribed 2 weekly .

It's not all in your head .

We've just been brain washed by medics 3 monthly with no medical backing why this was set .

I remeber reading here to inject before symptoms return..

It's taken me 5 yrsrs to understand that, as they didn't go for years and it was so gradual the improvements .

I was practically bedboind at the start with severe neurological symptoms.

I really thought I was dying .

So im never going to miss a B12 jnjection as a diabetic woukd nevef miss an insulin injection .

My brain is working ,has woken up thanks to B12 .

Take care.

Carry on with your regime to stay as well as possible as it maintenence not a cure.

[Wwwdot]

Hi Emmers5

Why do you think it’s all in your head when you have the evidence of how your body is feeling?

Far from being a hypochondriac as you worry, you sound like a sensible, balanced individual who is in tune with their body.

I fully understand the desire to inject less and I sometimes feel the same but I now counter this with “I want to live more” and that helps me accept frequent injections.

Now let’s look at the impact of moving from an injection frequency of every 5 days to every 7 days. It doesn’t sound horrific but it is in reality a big change to a body needing B12. 5 days is 120 hours and 7 days is 168 hours. That’s a 40% step change. Ouch!! No wonder you suffer!

An analogy is that if you were a runner wanting to extend from running for 120 minutes to running for 168 minutes it would be a monumental jump, and you would build up the difference gradually by running for 125 minutes for a few days, then 130 minutes etc.

But before we accept that reducing injection frequency is the way to go let’s look at the speed with which symptoms return, particularly as anxiety and panic attacks are horrible symptoms. The late Dr Chandy’s book on B12 is fascinating and whilst it does not profess to provide all the answers it does give credence to the diverse range of symptoms that we experience, particularly the rapid return of symptoms.

So I would consider re-evaluating your journey so far and recognising the success it represents and hopefully seeing your injection through the more comfortable lens of wanting to live more.

You are doing well.

🤗🤗🤗

[Emmers5]

Thank you for such kind support. I can't tell you how much I appreciate this forum. I feel like I never know what is causing my discomfort. Is it the b12, my thyroid (hypo for 40 years and recently had issues and dosage change) or just the regular catastrophes in my life (it's been a bad year, can't wait for 2025). SOOOO tired of health problems, so tired of doctors, so tired of injecting, tired of family thinking I'm randomly just awful and mean and snappy, of never knowing, and frustrated with myself thinking if I would just have some courage and discipline to lose some weight and build my strength back would the rest just take care of itself? Wow! Didn't mean to totally dump on everyone this morning...

[KBird01 in reply to Emmers5]

I think you've just answered your own question here Emmers5 . You've had a terrible time this year and hopefully 2025 is going to be a better one.

When the time is right, then you can think about making changes and getting where you want to be, but right now in the depths of winter while you're still feeling challenged isn't it.

Instead, be kind to yourself and give your body and mind the love and time it needs to heal. You want to be well and the right time will come I promise.

My friend doesn't make new year resolutions btw. She thinks it's the wrong time of year. She always starts any new changes and journeys at spring equinox , which makes so much more sense!

🤗

[DiSews]

It's tough, isn't it? I have days that I wonder if I can really go through with the injection, but I remind myself that it is a small price to pay (and it's over and done quickly) to live rather than just survive. Ironically when I get most anxious about the jabs is when I need them the most. I have been trying to move from daily to EOD, but just can't yet as my symptoms come right back whenever I try to stretch them out. The time I am taking to heal tells me that I have been sick far longer than I realised. I just have to bear with it a little longer to reap the benefits. Be kind to yourself - be patient as your body mends enough for that next stage. I try to see it as a kind of 'sabbatical' season, recovering and regrouping physically, mentally and emotionally before I get stuck into all the things that I have had to set aside for the last few years.

Warm hugs 🫂

[mcg-woo]

Hi!

Nope, not in your head. Sounds just like me. The problem with letting symptoms resurface is that if it goes on long enough, it takes even more injections over a long period of time to get back to where you were before the relapse.

I was symptom-free for at least a couple of years before a set back due to US shortage of hydroxo. I’ve had to increase frequency of injections and am having a difficult time getting back to a once weekly injection schedule. Seems I’m stuck on twice per week for now. If I try to go back to once weekly, mild symptoms resurface.

I know how you feel. I inject twice weekly IM and hate it, but what choice do I have? Wish there was another way, but this is my only option. I was diagnosed in 2016 in my early/mid forties and it was a struggle obtaining adequate injections for full recovery. I finally got there after several years and now this. Do what works best for you! We’re all different! Good luck!

[Cherylclaire Forum Support]

The thought of returning to what is for many a nightmare journey of worsening random symptoms affecting not only your whole body, but your ability to think, to drive, to work, to maintain relationships with anyone: friends, family, work colleagues, GPs, consultants, nurses, chemists, shopkeepers, librarians ......

(sorry, that might be just me !)

It is additionally frightening if you have not got the support you need at primary care level, because they can have no idea of what is happening to you if their understanding of the range and severity of B12 deficiency symptoms is missing.

So how can you work out for yourself what is fear and what is a return of symptoms ? Don't concentrate on trying to prove anything to anyone else, concentrate on you alone and gaining an understanding of what it is your body needs to function normally. Let others do their own homework !

The ones that are close to you will notice anyway, since it affects their daily lives too. I've often been asked "Isn't your injection due ?" - and find (annoyingly) that it is true. I need to check the calendar more often. Someone this observant can also be a very useful witness when going to consultant/ doctor's appointments.

Ensure that if your GP wants to rule out all else by elimination tests and consultants appointments, which is after all a good idea, that this is not getting in the way of starting a B12 trial or preventing treatment continuing uninterrupted/ improving treatment.

Having regular monitoring of folate, ferritin, thyroid, vitamin D can be useful as these can often be a problem, low within range, erratic. However monitoring B12 levels once injections have started won't give a GP any useful indicators - and is advised against in medical guidelines .

The other thing that can be useful is a record of what you are experiencing daily. A chart of your symptoms or at least the symptoms that are of most concern to you. Choose a few key ones: the most visible (especially if the GP has noticed them already) - such as hair loss/ yellow-grey skin colour, the most frequent, the most debilitating and certainly any neurological symptoms. At the beginning, this can seem pointless, as nothing has changed yet and symptoms are bad and frequent - but this is precisely why it is necessary ! Record these symptoms against when you have your injections, so that with any luck, a pattern will begin to emerge that can inform when you actually need injections.

Remember the aim should always be to pre-empt the return of symptoms, not to accept a lifelong cycle of deterioration and recovery. Your GP should also want that much for you.

Remember who you are. Who it is you are trying to save - so that you recognise yourself when it happens ! Look for glimpses at first. Have patience - it can take a long time and a lot of B12.

Good luck.

[Wwwdot in reply to Cherylclaire]

Hi Cherylclaire

Lovely reply to Emmers5,

I just laughed at this, especially the feeling in brackets!! ...

"The ones that are close to you will notice anyway, since it affects their daily lives too. I've often been asked "Isn't your injection due ?" - and find (annoyingly) that it is true. "

🤗🤗🤗

[Cherylclaire Forum Support in reply to Wwwdot]

And there was a time, way before this, when it would have been inconceivable to have forgotten about an injection being due. So that either counts as an improvement - or my memory is deteriorating !

[I'm going to chalk it up as a win.]

[Wwwdot in reply to Cherylclaire]

Yes, you are right - we need more pats on the back! Defo a win!

But the current dose options of 1mg/ml I believe make reduction a challenge as the step differences between injections become huge and not everyone can cope with that. I certainly find my body is very sensitive to missed or very overdue injections.

🤶🤶🤶

[Cherylclaire Forum Support in reply to Wwwdot]

Yes, I agree. I'm not so sensitive perhaps - I sometimes don't notice the deficit until the next injection along..... even where others might !

[Moviebuff12]

Hi Emma,

I started self injecting subcutaneously when my GP tried to push my monthly intramuscular injections to 3 monthly. Realised I had to take care of myself. I started with an injection every three weeks then two weekly then once a week. I felt much better but still deteriorated towards the end of the week so decided to try twice a week roughly. My health is maintained and I don’t feel like I am deteriorating. My suggestion is listen to your body.

[Wwwdot in reply to Moviebuff12]

Hi Moviebuff

Well said!

We must listen to our bodies and tie our own boat!

Yay! to you!

🤶🤶🤶

[StRaphael]

how much B12 in each injection?

[Enuffisenuf]

After 12 months I'm still ed or eod. My big toe is my guide !Take what you need to feel well.