b12 loading dose pain

[Flowerspink]

hi, I’ve on my 5th loading dose of b12, and I have really bad nerve pain in my hands and feet, I’m really struggling with the pain, I’m on 3 pain killers and now sleeping tablets. The pain seems to have got worse since starting the loading doses, had anyone else had this? I’ve asked doctors but they don’t seem to have any answers to how long it will last.

before I knew I was deficient I had all over body pain, sore mouth and throat, could hardly get out of bed, most of this pain has now subsided but I’m finding it hard to cope with the constant pins and needles .

Can anyone who’s experienced this help with advice?

[Nackapan]

Try and stick with it.Sounds like alot has been achieved already with so few injections.

Thd loading 6 injections I found overwhelming .

I too was initially mainly I bed.

Nerves are waking up and erratic

Most of my pain was in my head causing horrific migraines .

It will calm down by a week after last loading one in my experience.

With neurological symptoms every other day should continue until no further improvement

Then you have to make sure your maintenence b12 injections atd frequent enough.

Make sure folate level okay.

Often 400mcg needed daily .

And vig D and ferritin.

Iron should also be checked.

Once on injections no more testing of b12 is necessary as levels are meant to be high and you should concentrate on symptoms.

[Flowerspink in reply to Nackapan]

thank you, I’m in the uk and they only give you 6 loading doses, so I’ve only got one to go on Wednesday, then I will have 1 injection every 12 weeks, I am just worried I have long term damage. I think being in this much pain is just making me think the worse .

[Nackapan in reply to Flowerspink]

I'm in the UK too.Every other day until no further improvements I wax put back on as had severe neurological symptoms.

All down to b12 def.

It's in their 'bible' guidance NICE guidelines.

Also state every 2- 3 months

My mum has NHS

8 weekly

My daughter 10 weekly

I have 2 weekly .

Everyone needs a different regime to keep symptoms at bay.

Om on no other meds to muddy the waters .

The pain is better than no response as nerves waking up

[Kat_88 in reply to Nackapan]

how long you were on Eod injections? I feel very slow improvement these days ( after 2 months and half of Eod injections) and last few days even my muscles became sore again! Should I space out? Thanks

[Nackapan in reply to Kat_88]

Initial loading doses then a 5 week gap as supposed to wait 3 months .Then EOD reinstated I stayed on for 5 months I think .Then x2 aweek

Then x1 a week

Then every 10 days

14 days

21 days.( on 3 occasions only trying oral/ sublingual b12 to trial every day between

Very very slowly

But needed more so

Back on every 2 weeks.

Then settled on weekly .

All over a 4 year period .

I woukd personally keep up the EOD at present.

Healing often is not in s linear line .

Keep a log.

[Technoid]

yep! Thats what happens! I had pins and needles in my feet and bad nerve pain in my hands so bad I could not lift a kettle, type or text. The damage was already there but the myelin sheath was so damaged, I was not getting the full picture. With B12 on board, the myelin gets repaired and the pain gets worse as the nerves begin to transmit better, revealing the full extent of the damage. It will get better but how much better is impossible to say - a lot depends on how long the deficiency has gone on before treatment was started. I have no hand pain anymore and only slight hand tremor.

[Flowerspink in reply to Technoid]

thank you

[NJMommy]

I know it sounds ironic to say, but that pain is good news, it means your nerves are repairing. I had such significant pain during that regeneration window that my neurologist put me on a drug called Gabapentin. It was a god send. I’m in the US so I know healthcare is different here, but it doesn’t hurt to ask your doctor out it. Good luck and I hope you feel better quickly!!

[Flowerspink]

thanks , I’ve just been put on pregabalin, so hopefully this will help a bit more, a was on amitriptyline but it really didn’t agree with me. Can I ask how long did your nerve pain go on for? I have been told it’s all part of the healing process. I’ve got my last loading dose tomorrow. Hoping the pain might subside after that.

[Nackapan in reply to Flowerspink]

I also tried amytripyline for head pains ect.Didn't suit me.

Time is what you need

[PAapr22]

hi Flowerspink

I can relate exactly. A month after my final dose I was hit with terrible aching over my body from what felt burning inside my bones and could not settle mainly at night. But also all day sometimes

Nerve shocks up my arms.

I had nerve conduction tests and my neurologist confirmed damage and likely B12 issue I have PA atrophic gastritis as per positive AB test and endoscopy

The team here advised me it’s normal and they were correct. After about a year now from loading I’m starting to feel more human.

I am now on monthly GP injections (yes fought for that) and SI to top up. Touch wood it’s working. But need to go on symptoms. For me I know to SI when my eyes start to fog and ache.

But I’m back to jogging, cycling and gym. Mainly as this group advised me through the painful period from diagnosis to getting treatment.

Regards.

[Maisal11]

it’s potentially reversing out symptoms.. are you taking folic acid, a b complex, magnesium and eating the rda of potassium? This will ensure everything is balanced

[Wwwdot]

Flowespink

All good advice above. If the B12 triggered the pain that’s good shows it’s working.

You need constant B12 at least every other day until no improvement or you will just go back to square one.

Decision time … either your GP gives you the b12 every other day or you do it.

Many of us in this forum have had to do it ourselves - including me. I have now found that every day (and sometimes twice a day) is what works for me.

Hang in there, you can’t overdose on B12 so little risk compared to the potential effects of Gabapentin etc.

I wish you well on your recovery journey. 🤗🤗🤗🤗🤗