how quickly did you regress after B12 loading?

[TheLabSquad]

I finished my initial B12 loading almost exactly one month ago and initially felt enormously better. However, during the last week I have started to feel like I did before; irritable, weepy, fatigued, constipated and so on. I really can’t believe I need monthly injections so am thinking I am imagining it although I’m not generally that way inclined. Anyway, my question is, and I know it will vary by individual, just how long between injections is normal (for you)? Thank you

[Calise]

After loading doses, I asked my gp for more b12 after 6 weeks. But I soon found out I can't go that long after a single dose and need it about once a week depending on what I'm doing. I hope that helps.

[TheLabSquad in reply to Calise]

Thank you, it does!

[charks]

Some people are quite happy with the usual b12 injection which is every 2 or 3 months. But I think that this is very rare. But persuading your GP to give you more frequent injections is almost impossible. Which is why most people on this forum self inject.

[TheLabSquad in reply to charks]

Thank you for your reply. I think I’ll take what the GP offers (if anything) and self inject in between as the thought of 2-3 months genuinely worries me knowing how much better I initially felt.

[Orchard33 in reply to TheLabSquad]

I think it's quite usual to accept the NHS regime and SI at a frequency that works for you. In the early stages of treatment and recovery bear in mind that you'll probably also be making up for a long term decline which means a rather entrenched deficiency.

[TheLabSquad in reply to Orchard33]

Thank you - my thoughts exactly.

[Nackapan in reply to TheLabSquad]

I never felt better initially but a steep decline 5 weeks after loading doses .I persevered ( not easy when ill) and went back on EOD b12 I jections for months due to severe neurological symptoms .

[TheLabSquad in reply to Nackapan]

Thank you for your reply. it’s the neurological symptoms that have hit me hardest.

[Nackapan in reply to TheLabSquad]

NICE guidelines state EOD until no more improvements

[PaintLadie]

I do daily injections. Once in the morning and once in the evening. I split a days dose in 2. At one point I was taking 3 injections daily to keep off neurological symptoms which I also currently have to do when I get sick or have a particularly stressful day. Yesterday after 5 months of a lot of injections I skipped my evening injection because I was tired and was able to fall asleep without muscle pain and spasms for the first time in a long time. I did feel the effects by the morning and made sure not to skip todays morning and evening injections. I don't know how long I will have to keep this up or if there will ever be a time when I can scale back a bit. Time will tell but for sure my body is still healing from being severely deprived proper nutrition for so long.

[TheLabSquad in reply to PaintLadie]

Thank you for your reply and good luck with your continuing recovery ☺️ I guess we all need to work out what works for us.

[Wheat]

hello, last loading dose Friday afternoon, on waking following Monday felt bad and journal notes 3 symptoms back. So, s.i. several x daily.

[Motheroflittle]

GP never gave me loading doses so my experience is backwards from most. GP started me at once a month, then he increased to every 14 days. After a year I decided to increase it to weekly. For the past six months I have been at twice a week and just last week started EOD. Its been two years, slowly working my way up to EOD. The more I inject the more improved my symptoms have been. I am glad I did not hesitate to increase dosage on my own.

I wish the best for your B12 journey💉

[TheLabSquad in reply to Motheroflittle]

That’s really interesting, thank you!

[Jo5454]

I was monthly after 1st loading dose,but could feel it diminishing after a fortnight & it took over 2 yrs for pins/ needles to ease,but eveb then some parts blood test MCH,etc were showing signs of not enough b12.If you've got neurological symptoms they should offer them at least every 2 months shouldn't they.

Are your levels of cofactors topped up. I noticed for me,b12 seemwd to last bit longer if folate,ferritin,vit d,etc in upper range.Are they testing yr iron folate 8 wks after loading dose?

I've just had another loading dose & been advised mine 3 mnthly now,erk. Due to feeling rough, hard to tell what's due to healing & when I'll notice if I need more.

At least its a good sign you've felt better which is a big relief you're on the right track but know its very daunting being made to feel that you shouldn't need anymore until the NHS feel fit to say so & not easy battling whilst feeling that way.

Hold onto those better wks & see what's the best you can get from yr Dr 1st,knowing yve the back up of all the lovely lot on here...

[TheLabSquad in reply to Jo5454]

Thank you! I sort of have a plan of action now which makes me feel better in itself. I do take folic supplements alongside the b12 injection and daily vitamin D. My private (the only way I got the deficiency recognised!) consultant has had all my blood tests and I’m due to meet him soon.

[Jo5454 in reply to TheLabSquad]

That's good, glad you've got a plan of action. Yes I was the same & had to pay to get it diagnosed 1st time around. I was lucky though as at time St Thomas NHS were offering Active b12 tests/MMA for about £40. Needed a GP referral tho,which took months of persuasion! Now making plan of action myself for if I need it this time around! It really shouldn't be this difficult should it! Good luck and will keep an eye on how you get on...

[B12life]

typically 2days to a week after any attempt to space the injections. I could tell then I needed daily injections. My career was at stake so I wasn't going to let the doctors drop the ball. I searched, found this forum and then was educated on that it is possible to just get the supplies.

[TheLabSquad in reply to B12life]

Thank you, exactly what I’ve just done. My consultant prescribed more B12 but it was fearfully expensive so I’ve just done my research here too!

[B12life in reply to TheLabSquad]

Well this is the best forum and when you start feeling better send PAS some donations.

[BeachArt]

For a very long time I needed EOD injections, now it is every 3 days. If I've done a lot, or am unwell with a virus or suchlike, or have allowed myself a drink or two, I will have extra jabs.

[B12again]

After my loading doses, when after the fourth I was beginning to feel much better, I thought great I’m going to be fine now. I was put on 1x12 weekly jabs. Two weeks after my doses my symptoms returned and then the problems of getting the right treatment began, after 8 months (for many, very much longer) I am still stunned as to why the majority of the medical establishment is in such denial and ignorance around the best treatment for B12D. What makes it even sadder is the lack of empathy and sympathy for sufferers to the extent it ruins careers and lives, and, seemingly they couldn’t care less. I SI EOD and exactly the same happened, after the fourth injection I began noticeably to feel so much better. Today I have my life back, there are slumps but I recognise them for what they are and I just continue onward, and, hopefully, upward. All the best for your road to recovery.

[TheLabSquad in reply to B12again]

Thank you for your reply and I’m glad you have worked out what works for you. I think I know what I need to do to maintain things. I’m not anticipating much help from the GP but at least I can sort myself out by self injecting - although I quite agree, some support from the GP would be nice - we shouldn’t have to be self funding of self injecting (unless thts a preference!) good luck

[Hockey_player]

Three weeks is too long for me. So I do them once per week so I don't start regressing.

[jillcur39]

Very difficult to have a one size fits all - I had to try different days and have now settled on every 10 days which suits me perfectly. It was not easy to get this set up - but I kept on and with the help of my consultant the practice nurse now injects me every 10 days. Any disruption in this (bank holidays etc) and I am almost back to ground zero with symptoms.

[TheLabSquad in reply to jillcur39]

That’s great to hear. I’m going to try and get my GPs to provide the B12 to suit me - we shall see . As long as the fatigue doesn’t set in I can be pretty tenacious!

[am111]

Generally, we have to reduce gradually. You should get a shot now and then see when the symptoms return and then take a shot. At least for some people, they can reduce, for others, they have to inject more frequently to keep symptoms at bay. Each person is different.

[TheLabSquad in reply to am111]

Thank you. Yes, I wasn’t expecting symptoms to return after 3 weeks but now I know and can adjust !

[am111 in reply to TheLabSquad]

It happened to me. I took 4 once-a-week shots and then after a month, the symptoms returned. I took another shot and symptoms were at bay for quite a while after that.

[ClareP5]

Every other day - do it myself - couldn't bear to go back to how I was.

[ClareP5]

It's worth mentioning that someone - Dr Chandy I think? Said you should inject EOD until there's no further improvement in your health/symptoms - that took 6 months for me. I then tried to do to every 3rd day and immediately my energy started to slump. So I'm stuck on EOD - don't enjoy it, but I'd rather SI than waste my life feeling crap!