How often is often?

[Crepello]

Diabetics self-inject, sometimes on a daily basis, and sometimes more than once daily. So who decides, and on what evidence, than once every two or three months is good enough for B12 sufferers? Why the disparity? I remember reading something on the old PAS site about injecting on alternative days for folks with neurological involvement until no further improvement but can’t remember the details. I self-inject, sometimes every day, and that a difference and keeps me going but I find the benefit short lived and vanishes overnight. It’s either that or staying in bed all day.

[Nackapan]

Yes diabetics usually inject 4 times a day . They have the advantage of a blood test that givez an average blood sugar over 6 months.

Also have a blood glucose monitor to check blood sugars regularly.

Have to measure the amount of insulin injected on what carbohydrates are eaten calculated after each meal.

They have long and short acting insulin too.

Alot of research has been done for a much better understanding.

So far more sophisticated.

Of course you overdose on insulin.

Which cxn kill you

Underdose and ketone sets in then a coma and death.

Also if course drug companies have funded research as a financial gain.

No funding for b12 .

I imagine the scientists who first recognised PA and what it could do finding b12 saved their lives are turning in their grave st the lack of interest since b12 injections began.

And as you rightly say no evidence of why 3 monthly b12 injection rehind wax set yesrs ago. Now 2-3 monthly on bnf guidelines.

The same guidelines you mention that state every other day for neurological symptoms but is rarely adhered to In practice.

Of courses b12 deficiency/ PA is a slow death without treatment.

As is type 1 diabetes

Yoh only have to observe small animals that do not get treated at a gir either complaint.

More research needed .

More accurate testing for PA

Better understood regimes of b12 injections.

Better understanding of how it shoujd be tested More often tk treat alog earlier tk tur things round before permanent damage.

More knowledge of the damage it can do.

Rather tgsn expensive tests looking fir something else wge with better understanding it's under their nose with a cheap treatment.

I agree it's infuriating so much is d.i.y

And

How often is often? ....anx for how long......and what sort....sbd what method taken......

I'd love to know at what level my body coujd function at.

Then a way of getting a steady flow in a more calculated way

Rather than the one dose that supposed to fit everyone .

Hope youve written yo your Mp.

[Emsworthy in reply to Nackapan]

As a Type 1, I am currently injecting anywhere between 5 and 10 times a day. Over the last 32 years, I've figured out what works for me.

I'm also self injecting for PA, as I quickly figured out that every 12 weeks didn't work for me. I'm doing it once a week (although cyan rather than hydroxy) and it's working well. Nothing will change until more research is done, but this won't be funded, as there's not enough money to be made.

[lynxis]

I feel best when I inject every day, which I started doing after hearing from other people on this site. With every day injections, I feel as close to normal as I have since I really started deteriorating over 3 years ago. I have tried many times to decrease the frequency of injections but neurologic symptoms come back rapidly; I can't even seem to make every other day work, which doesn't make sense to me, but it's the reality. I wish there were more research. I wish there were more sympathetic doctors who really listened to us. I wish I knew for sure that my body was going to be okay in 10 or 20 years (I'm only 40) from all these injections, or why I need them so frequently when others get along fine with every 2 or 3 months, or what I could do that would make me need fewer, but I don't get to know any of that. All I can do is trust the fact that I can function most optimally with this frequency, and keep hoping I won't need it forever.

[VellBlue in reply to lynxis]

As well as experimenting with frequency and finding what works for you (as you have done), you can also try dosage. I find injecting with half an ampoule works well for me.

Yes, it doesn't feel great to be so dependent on injections, especially when reassurance from the medical profession is often lacking, but it works. 🤷

[lynxis in reply to VellBlue]

What do you do with the other half of the ampoule? Do you use it the next day?