Hydroxocobalamin

[Nackapan]

Am I right in thinking it should stay in your system up ton 3 Months? I'm on 2 weekly b12 injections at present. Am Trying to do a little more so seeing if that frequency is enough. I staggered again over weekend (old symptom) concerned I wouldn't make it back from short walk. 4 days after injection. It then resolved . This roller coaster of symptoms so confusing and lost confidence in doing walk around block. Made myself do it . One dodgy again and then absolutly fine?? Almost as if I'm having waves of weakness and waves of a bit of energy. Am finding it hard how to pace as so unpredictable. Tried to push in past but ended up bedbound with migrain. I'm still doing so little and getting so isolated.

[Gambit62 Administrator]

The rate at which your kidneys remove excess B12 varies considerably from person to person. On average people retain levels of B12 with hydroxo for 2 months. On average people retain levels of B12 with cyano for 1 month. However, there are significant numbers of people who don't follow this pattern and some people actually retain cyano better than hydroxo.

There is no way of knowing how you as an individual will respond to B12 and how long you will retain it so you can't go by an average (particularly one from large samples that show a lot of variation) and say it applies to any specific individual.

[Nackapan in reply to Gambit62]

Okay thanks. I'm sticking to 2 weekly at present as trying to do a bit more. I think if I reduce it may be difficult to get them back. Shouldn't but unsure. The surgery want to get me to 2 monthly eventually. So do I. I'm hoping more repair going on .

[Cwilli in reply to Gambit62]

Hi Gambit62

Your comment brought to mind a question I have had. I had wondered if different type of B12s stay with people for different amounts of time. Does methylcobalamin have an average system time fram like the other two B12s?

Thanks so much

[Nackapan in reply to Cwilli]

It must do. I'm sorry I don't know what it is. I think hydroxocobalamin is supposed to stay in the system the longest . So if that is 2 months a bit less?

[Gambit62 Administrator in reply to Cwilli]

cwilli - I'm not aware of any specific studies done to establish retention of methyl

[mummychelle79]

I am personally on alternate day injections at the minute. My dr is keeping me on them as she has seen a massive improvement in my symptoms. The 2/3 monthly cycle is a maintenance dose. So once you have finished healing, going down to that sort of amount is fine for a lot of people. If though you are still symptomatic (as you are) you need much more frequent injections. In an ideal world you want every other day until no further improvement in symptoms. Regardless of whether they are neurological or not. This can take years - if only on 2 weekly injections imagine how much longer it will take!

I have heard from my neighbour that the PA Society told him monthly injections are the most frequent anyone will need once you’ve finished healing. That’s how often he has them. I will reduce down my injections slowly once I feel my healing has completed until I am happy that the level I get to is keeping me well.

It’s not a race to get to the less frequent injections. Don’t be pushed by your dr into doing it too soon. And remember that exercise depletes B12 so be careful not to overdo it whilst you are still healing!

[Nackapan in reply to mummychelle79]

Thanks. I was on every other day but it seemed no more improvements after a couple of months after reinstating. I then went 5 days then weekly . I feel I will stay on 2 weekly for some time as I'm doing a bit more ( fingers crossed) you are right it's not a race. I will relax! I'm certainly not overdoing it Thsnks. Just pleased to be pottering about the house and cooking a bit. I fortunately have stopped paid work as that would be impossible at present. I'm still in or on the bed 14 hours a day but that's an improvement. At one point I was pushing too hard and it set me back. Hard to get the balance of healthy physicality. I've got lots of healing yet. I'm starting to really miss the TV as that made me rest between jobs! Hope you continue to heal. T C