Does the body require more Hydroxocolalamin if taken more than every 3 months?

[Contralto]

In two months I have heard of both a nurse and a phlebotomist say that the more frequently a person has an injection of Hydroxocobalamin, the more frequently the body will expect it. Has anyone experienced this and felt they had to inject more often?

[JanD236]

Following diagnosis I certainly had to increase the frequency of injection to get to a point where I feel well every day. I went from injections every 2 months to monthly to weekly and for the last few years I’ve settled on twice weekly.

Why some people require injections more frequently than others is one of the big unknowns and is currently subject to research by the PAS.

As we don’t currently have the answer neither your nurse nor phlebotomist are able to talk about injection frequency with any accuracy nor authority!

[Hidden in reply to JanD236]

Thanks. As I had not personally spoken to the people concerned, I could not ask what they based their statements on. I was merely asking if anyone felt that one they had to take injections more frequently, that this continued. Not sure what word I need there - not escalate - take the injections with even less time between them.

[wedgewood]

I agree 100% with JanD236 ..... I would like to know the source of that statement . Can you ask them to quote chapter and verse from scientific papers? I think that they cannot ,because it doesnt exist . So little research has been done on the subject of Pernicious Anaemia.On this forum we all know that different people require a different regularity of injections . We don’t know why this is -could be a genetic reason , could be to do with how long a patient has had P.A. before treatment was given . But to state that more injections than 3 monthly makes the body need more is preposterous . Frequency required depends on how long it takes for symptoms to reappear . One needs to take injections before the symptoms return start to return . It’s as simple as that .

[Hidden in reply to wedgewood]

I was merely asking if anyone felt that once they started taking injections more frequently (as I now have this year due to learning much from yourself and others on this website), they then had less time between injections. I am now injecting fortnightly, so am wondering if this would then go to weekly etc.

[fbirder]

There are some people who believe that having large amounts of B12 can cause the body to form antibodies to it.

But there is no real evidence to support that,

[Hidden in reply to fbirder]

Thank you. I was asking if anyone had personally experienced it 🙂 as I have now realised I need injections more frequently.

[fbirder in reply to Hidden]

I found that I had to increase frequency. But that's because I didn't realise when my symptoms were gone.

When I started self-injecting I got myself injecting often enough to keep my fatigue at a steady level. More frequent jabs didn't help, so I steadied myself at once a fortnight. Then I was told that it was obvious, to other people, that my mood changed about halfway through that cycle.

When I started looking for it I, too, became aware that I was getting more irritable and paranoid in the second week between jabs. Now I inject twice a week, and I'm still a grumpy git, but no worse than I was before PA.

It's not that I need more frequent jabs. It's that I didn't recognise that I needed more frequent jabs for a long while.

[Hidden in reply to fbirder]

THANK YOU 😀 from another grumpy git!Frequently - that was the word I needed! ho ho ho

I am 63 and after having an Ileostomy at age 22, I had fatigue. Every GP I saw did nothing, until I was pregnant and completely unable to do anything/depression and told my then GP something had to be done. He tried Hydroxocobalamin - life was normal! As years went by, I was fatigued again, but not until I found this website during Lockdown 1, was life to change again in learning I could self-inject with ampoules bought from Germany when I needed to. I took notes, too, and now know I need injections fortnightly.

I am 63 and after having an Ileostomy at age 22, I had fatigue. Every GP I saw did nothing, until I was pregnant and completely unable to do anything/depression and told my then GP something had to be done. He tried Hydroxocobalamin - life was normal! As years went by, I was fatigued again, but not until I found this website during Lockdown 1, was life to change again in learning I could self-inject with ampoules bought from Germany when I needed to. I took notes, too, and now know I need injections fortnightly.

[wedgewood]

Are you Caledonia or Contralto ? I just kept increasing injections until I reached a frequency that kept symptoms at bay . They have now stayed the same for 5 years .

[Hidden in reply to wedgewood]

I am both until I get time to figure out how to set that right 😀 In using my phone before, I could not log on and did not have my list of passwords etc.Thank you for that information. If you have stayed at the same level for 5 years, that is what I wanted to know

I am 63 and after having an Ileostomy at age 22, I had fatigue. Every GP I saw did nothing, until I was pregnant and completely unable to do anything/depression and told my then GP something had to be done. He tried Hydroxocobalamin - life was normal! As years went by, I was fatigued again, but not until I found this website during Lockdown 1, was life to change again in learning I could self-inject with ampoules bought from Germany when I needed to. I took notes, too, and now know I need injections fortnightly.

THANK YOU again for all your help here.

[mcg-woo]

My doctor told me that some people just need more frequent injections than others. No way I could go three months without an injection. The one time I did that, major crash and about two years to recover. From what I understand, for those who can’t absorb B12 through the gut, there’s also a problem with the recycling of b12 in the body and thus, the storage of B12 in the liver, so these folks are basically dependent on b12 injections. For the longest time, I couldn’t understand why I got so sick without frequent injections if the liver stores 3-5 years of b12 until I recently came across this info online. This theory seems to explain it best. Is this everyone else’s understanding of this?

[Hidden in reply to mcg-woo]

Thanks I did not explain myself well, I'm afraid. I was asking those who self injected more than every 3 months, if they felt after a time, they needed to inject in even less time.

[mcg-woo in reply to Hidden]

I think it’s as simple as loading doses frequent enough to resolve all symptoms and then finding the right maintenance dose to remain symptom-free. This varies based on the person and can take time to find the schedule that works for you. I’m probably like most people in that I would like to have as few injections as possible while not having the return of any symptoms. I have been injecting for about four years and still have to get up my nerve each and every time. People say all the time to me that they don’t know how I self-inject—they could never do that—to which I reply, “I never want to feel that bad again and if you knew how it felt, you would be able to do it, too!”

[Ritchie1268]

I only started self injecting after doing research, keeping a diary of any improvements, how I felt and for how long when symptoms returned, and reading through posts and asking questions on here. Then realised it isn't a "one size fits all" approach as many doctors believe, as we're all different. I settled on every other day injections and this seems to be working fine.

I've tried spreading it out but soon feel very low with very little motivation etc.

This was when I was first diagnosed and realised the one every 3 months did very little. So I don't believe it's the more you have the more you need.

It may be down to what a lot of uneducated healthcare professionals very wrongly believe, and that is that it's addictive!

Coming from someone who has overcome addiction, I can hand on heart tell you, that by no means is getting B12 injections addictive in any way, shape or form.

[Hidden in reply to Ritchie1268]

Thanks I did not explain myself well, I'm afraid. I was asking those who self injected more than every 3 months, if they felt after a time, they needed to inject in even less time

I am 63 and after having an Ileostomy at age 22, I had fatigue. Every GP I saw did nothing, until I was pregnant and completely unable to do anything/depression and told my then GP something had to be done. He tried Hydroxocobalamin - life was normal! As years went by, I was fatigued again, but not until I found this website during Lockdown 1, was life to change again in learning I could self-inject with ampoules bought from Germany when I needed to. I took notes, too, and now know I need injections fortnightly.