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Loading dose reactions

Myoldcat profile image
33 Replies

Hi all, so happy to have found this forum. I was diagnosed as B12 deficient just a couple of weeks ago after being unable to attribute my weird collection of symptoms to either a busy life (fatigue, brain fog) or spinal nerve inpingement (cramp, twitches, bone pain). It was the lip twitching that finally made me go to the GP for blood tests, so I feel fortunate that I had a relatively quick diagnosis. BUT I have felt rubbish during the 2 week loading dose process - headaches/migraine almost every day; dizziness; and after dose 5 which was 2 days ago the most awful stomach pain and bloating with terrible feelings of dread. We've postponed dose 6 till next week as I couldn't bear it happening again, and still have the headache and gastric pain/bloating. The practice nurse said she'd never come across any side effects, so even though I do tend to react strongly to medications I'm wondering whether anyone here has experienced anything similar? And does it happen after every dose?? The upside is my energy levels and mental clarity have definitely improved when I'm not being felled by some other side effect...😬Thanks in advance.

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Myoldcat
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33 Replies
topazrat profile image
topazrat

I remember feeling total despair after my first jab. The very thing that was supposed to save me and make me better made me feel like I was dying! Your body has been without enough B12 for a while and its doing a lot of healing and its common to feel worse before you feel better. It does get better and no, you won't get the problems after each jab. I inject weekly and don't have any problem at all now.

Myoldcat profile image
Myoldcat in reply totopazrat

Thanks so much for the reassurance! On Wednesday night I told my husband to be prepared to call 999, that's how bad it felt. Imagine trying to describe that to the nurse without sounding bonkers! I feel as though I have the big red H for hypochondriac on my notes now...😂

topazrat profile image
topazrat in reply toMyoldcat

Either that or they put it all down to anxiety and try to fob you off with antidepressants😏

Myoldcat profile image
Myoldcat

Not going down that route... But I can see the range of B12 deficiency symptoms is enough to make some doctors reach for them as we go down the endless list!

KBird01 profile image
KBird01

I had dizzyness, headaches and palpitations when I started SI. Like you, I do tend to react to many medications. Personally, I played around with the dose

frequency and amount, adjusting this to when I feel I need it (currently weekly, but has been longer). I also find that administering ~0.7ml is the max amount or I get dizzy/headaches.

I'd say see how you go after your last injection. If you decide to self-inject you'll have more control anyway. Good luck!

Myoldcat profile image
Myoldcat in reply toKBird01

Thanks, just getting my head around the whole process and haven'teven contemplatedself injecting yet. My gp is going for loading dose then a 3 month gap, but even though the treatment is gruelling I already think I need to keep going with more frequent injections as my symptoms are definitely neurological. That will be a fun conversation - dear gp, a)I feel crap b) give me more! 😂

KBird01 profile image
KBird01 in reply toMyoldcat

Ha! Yes, good luck with that one! 😆At least you know you can have a more sensible conversation on here! 😉

PhilAB profile image
PhilAB

Reversing out syndrome. When I had my loading doses I felt I was dying. This reveals serious neurological damage, although your symptoms clearly showed that. Honestly, nhs in this country is not fit for service.

You have to keep going with injections. I went twice daily and it was hell on earth. But boy did I heal.

Myoldcat profile image
Myoldcat in reply toPhilAB

Sorry to hear you had such a bad time, but it is reassuring that other people have been so ill and come through the other side feeling recovered. Especially when the medical profession don't believe you! But now I have evidence and know it's not just me, so thank you PhilAB.

Bertiepuss profile image
Bertiepuss in reply toMyoldcat

Myoldcat I forgot to mention (only just remembered) - when I've had bouts of gastritis in the past, I too get easily upset with medications or supplements, I have found the Metagenics glutagenics powder with l-glutamine, aloe vera and deglycyrrhizinated licorice was really helpful in recovery and soothing the irritated stomach and intestines. If I don't recover in the next week or so I might get some or maybe the separate ingredients as it's become so hideously expensive in the UK. Just thought I'd mention it in case your stomach upset continues, hopefully we will both get over this quickly. uk.iherb.com/pr/metagenics-...

Myoldcat profile image
Myoldcat in reply toBertiepuss

Thanks for that advice, I've tried the liquorice before but not that particular supplement. Will investigate.

Bertiepuss profile image
Bertiepuss

Hi Myoldcat, your post is a timely one for me. I'm experiencing the same regarding gastric pain and bloating! Also got gas coming out both ends ☹️ I'm not diagnosed as B12 deficient (blood results look fine but I'd been supplementing) but I decided to try self injecting to see if neuro symptoms improve one of which is a constant drunk/dizzy feeling. I have now completed 4 loading injections and my gut has completely messed up, started after the first injection. Sorry I can't offer practical help but just to say I know how you are feeling. Keep strong, and as others say it should pass with time.

Myoldcat profile image
Myoldcat in reply toBertiepuss

Wishing us both better. Christmas is a bad time to have gut issues! 🤢

Bertiepuss profile image
Bertiepuss in reply toMyoldcat

I know, I didn’t realise it could cause gastric issues. Hope you’re ok and can manage to enjoy some Christmas food 🙏

mchimes profile image
mchimes

Hello- I'm new here. First post. I was just diagnosed with PA (in the US) and was going to get my first IM injection today. This gives me pause. What form of B12 are you all getting? I was prescribed cyancobalamin which I know is inferior to methyl. My bloodwork showed I am catching this early and probably still have some B12 reserves, but the hematologist still suggested supplementing. Maybe I will have less of a reaction. At any rate, I hope you feel better.

Hockey_player profile image
Hockey_player in reply tomchimes

I live in BC Canada. I can get injectable B12 here without a prescription. It was $4.71 here for 10 doses (but without the needles). It seems to work for me.

PhilAB profile image
PhilAB in reply tomchimes

Supplements are a waste of time if you have PA.

You cannot absorb b12 in your stomach, best thing is to follow NICE guidelines and inject at least every other day. Any b12 is better than no b12. I would also avoid all alcohol, go organic and supplement, and be careful with drinking water.

I was also diagnosed with ME but I knew it was b12 and other deficiencies. I am 50 now and feel like I am 18 again.

DYOR but I never take anything from big pharmaceutical.

Myoldcat profile image
Myoldcat in reply toPhilAB

I'm 65, feeling 105, so even feeling 65 again would be fantastic LOL! But feeling like 18 must be just amazing, so here's hoping 🤞

Oneash profile image
Oneash in reply tomchimes

Don't pause. B12 is vital for your nerves, blood oxygen, DNA and energy in every cell of your body. As you heal your nerves wake up to the damage already done. If you wait, more irreversible damage is perniciously happening.

mchimes profile image
mchimes in reply toOneash

Thanks all. I ended up getting a Mythl B12 shot at a local “IV clinic.” I was 2.5 milligrams in the bicep. I didn’t feel the shot at all. I felt my energy and mood boosted. I’m going to do these once a week, while still doing sublingual and I ordered some B12 lotion. Anyway, hoping this haunts and reverses the mild symptoms I was beginning to experience.

Myoldcat profile image
Myoldcat in reply toOneash

Thanks for the encouragement. Now I understand more about the reactions I had, I can be braver and tolerate the awful sensations if and when they happen. Especially knowing it's not uncommon to feel so bad... This time next year I'll be fabulous!

PaintLadie profile image
PaintLadie

B12 deficiency and the gut go hand in had. LOL maybe TMI, but I would personally keep on with the scheduled injections and treat the bloating and windiness with probiotics, fiber, and maybe a short fast. Your guts are probably working now and trying to push out any thing that's been sitting for a while.

ReallyWondering profile image
ReallyWondering

my only side effect from the weekly shots is ringing in my ears. At least I’m suspecting that. I’m in the US and they don’t do the daily loading doses. But I’m three months in and still have the same tingling in my feet. I’m wondering if this will ever go away.

Hockey_player profile image
Hockey_player in reply toReallyWondering

Try every other day until the tingling goes away?

ReallyWondering profile image
ReallyWondering in reply toHockey_player

I think I’ll try that. I have a 12 week supply that I can use, for now.

Myoldcat profile image
Myoldcat

Even in this single conversation it's really apparent that no two of us react the same way, and there's a huge variation in the protocols that work for each person. I can also see the NHS has rather a "one size fits all" approach, so lord knows how long it's going to take to find the right regime! Oh well, diagnosis is the first step to better health 🙏 so onwards and upwards...

KDSeabourne profile image
KDSeabourne

Symptoms are quite common, I was diagnosed by a Student doctor when I was 16.. I was in hectic/and constant pain since I was 11...always ill, wouldn't sleep for days on end, I couldn't eat nothing but bread..So at 16 mega malnutrition, extremely high anxiety, heart rate, paranoia.. and so forth. As soon as I had the B12 injection it was like a light switch.

However i begain an appetite at my 3 loading dose and was just eating 🙃 then migraines and so forth.

All put down to malnutrition due to not having b12 present at all prior.

B12 literally makes the body food.. your body won't break down most foods or enzymes without it as your body needs b12 to make vast hosts of chemicals, enzymes and other chemistries.

Be assured you are on the road to recovery it only lasts for under a month the introductory systems and all will be OK.

My best advice is to go private, it's much more gentle and they actually have time to talk and understand.

JesusMercy60 profile image
JesusMercy60 in reply toKDSeabourne

Hello KDSeabourne, wow your malnutrition sounds like me, except I just turned 60, but for several years kept loosing weight and getting sicker, Dr's could not find out why so I gave up with them last year, then by prayer I found out I was b12 deficient and now I know I'm deficient with all the other vitamins, everything I ate made me sick and I'm slowly getting things down my digestive system very slowly, I will get to start injections hopefully next week as for now since November I've been on 1 ML per day but oral liquid. so Knowing you as well have recovered is an answer to my prayer as well. thank you for your posting your recovery. God Bless us all.

Oneash profile image
Oneash

Welcome to the club. Yes I have had plenty of gastric trouble, but not quite as severe as you described. I find keeping sugar low, plenty of fresh veg, moderate meat/fish and white bread best. No alcohol (2 cocktails on a girls night out last Thursday - Friday I was dying!).

I take a "Gut Power" supplement from Holland and Barrett, if things get particularly bad.

Reversing out takes a while. Remember every corner of your body is affected by this

I wholeheartedly recommend taking control and self injecting.

Myoldcat profile image
Myoldcat in reply toOneash

I stopped all alcohol about 15 years ago as I couldn't tolerate any. Will check out the Gut Power supplement. Currently swigging Gaviscon from the bottle when needed, most festive...

Myoldcat profile image
Myoldcat

So I've just had my delayed 6th of 6 loading injections, and in the 7 days between doses 5 and 6 all my symptoms have come back virtually as bad as before. Had a pretty good appointment with my gp who has agreed to another 6 doses, 2 per week to see how things go until we have more info from blood tests being done on Jan 5th. I know it's a piece of string question, but how long did it take on regular doses for people's symptoms to come under control ..?

Nackapan profile image
Nackapan

I missed your first post.During loading phase I felt like I was being poisoned.

Tinnitus started .

Head pressure

Migraines the day after .injections

Headache building on day of I jection.

The nurse had never seen such a 'reaction

Gp wanted to stop them .

Finding this forum I pushed to kerp going

.

I'm also sensitive to any medication.

I've not needed many .

Antibiotics for tooth problems I now know exasperated by b12 deficiency .

I really hope you've caught it early.

Hellish to start with but as you've read common amongst us .

I got alot worse before improvements started .

Like rebooting a computer .

I wish you well.

Myoldcat profile image
Myoldcat in reply toNackapan

Hi Nackapan, i think i may have missed this post originally but thank you for your support. Now 4 months in, and gastric issues are calming down somewhat thank goodness, so hopefully on a smoother path.

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