Been on B12 injections for nearly two... - Pernicious Anaemi...

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Been on B12 injections for nearly two years yet have the most awful flare up.

Jillymo profile image
24 Replies

As many of you will already know Iam injecting daily to keep symptoms at bay. For the last 4 days I have been in agony with a flare up of gout and stinging and burning back in my legs. I have also got the old foggy head back and for the life of me cant understand why ? ? ? 😭

Has anybody else experienced a set back like this ? I have had to resort to morphine patches and co-codamol to try and kill the pain. This is seriously painful to say the least and the toes on my right foot have a bluish tinge !

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Jillymo
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24 Replies
Nackapan profile image
Nackapan

Do you think you are fighting s cold or other virus? Doing more thsn you think?

Stress?

I've been on regular injections for over 31/2 years.

No rhyme or reason at times why i have a horrid day or two. Or longer.

Mind ard head related. Head pains ,headache eye sockets tinnitus off balance. Body like lead aching all over.

So try and plod in and if everything else eliminated

Pain killers until subsides.

I'm getting better at distraction techniques

Still on a roller coasta but on the whole a more gentle ride.

Bluish sounds like circulation or Raynauds??

Really hope it goes soon.

Keep up your chosen supplements and anti inflammatory foods

Jillymo profile image
Jillymo in reply toNackapan

It could be stress related my son is coming over from Bulgaria.

This pain is wicked I seriously dont know what to do with myself and tempted to do another injection. I am going to take some more painkillers and take myself off to bed. The pain is making me feel sick.

Nackapan profile image
Nackapan in reply toJillymo

Horrid . Hope s better day tomorrow.

Jillymo profile image
Jillymo in reply toNackapan

What I think caused the flare was I stopped the lansoprazole tablets, by doing so it caused a build up of uric acid in my system. I thought it would help my absorption and stomach acid by doing so - how wrong was I ?

I am back on them now and taking apple cider vinigar and montmorency cherry to calm the flare up down. Geeeeez was that painful but a little easier this morning Iam pleased to say.

The pain made me feel physically sick. 😘

Nackapan profile image
Nackapan in reply toJillymo

Oh thank goodness you've worked it out!

Narwhal10 profile image
Narwhal10

Oh my goodness Jillymo,

I’m so sorry to hear, you are in so much pain. Sounds hideous. The flare ups are absolutely rubbish. Like Nackapan said virus, infection, being too busy so not pacing or taking breaks.

Please ring GP if concerned about toes.

Wishing you better soon. Hope you are able to enjoy your son’s visit.

x

Jillymo profile image
Jillymo in reply toNarwhal10

Hi ya,

Read my reply to Nackapan above. 😘

Narwhal10 profile image
Narwhal10 in reply toJillymo

So glad you worked it out. Rest up. 😘

jade_s profile image
jade_s

So sorry to hear this! Have you had flareups this bad before? When i've gone downhill that bad, due to eg heat damage to or bad batch of b12, i progressively got worse rather than sudden onset like this sounds like. I can't remember having such a bad flareup 2 years into daily jabs.

Still, absolutely no harm in injecting 2x day when stressed (a few of us do) and/or ordering a new batch.

But if it is so painful and you've got blueish toes, and you've never had symptoms like this before, i personally wouldn't wait to call my GP or even go to a&e.

Could it be a DVT? nhs.uk/conditions/deep-vein...

I hope the pain subsides soon. x

deniseinmilden profile image
deniseinmilden in reply tojade_s

Wise advice!

Jillymo profile image
Jillymo in reply tojade_s

I have sussed out the cause read my reply to Nackapan above.

I wondered if it were a clot as I do suffer with sticky blood ( antiphospholipid syndrome ). It was due to me stopping the lansoprazole. 😘

jade_s profile image
jade_s in reply toJillymo

Good detective work! Glad it's starting to get better xxxx

deniseinmilden profile image
deniseinmilden

I've had it - especially in the past (I think things stabilise more with time) and have heard it reported quite often.

There's usually a trigger - in your case probably the stress - and the good news is that it does go and you can get back to as good as possible again.

It's definitely worth trying another jab - it won't do any harm at least.

Also be aware that you might be running a bit low on another nutrient and the stress (or whatever the trigger) has just dropped that below the borderline and so the B12 can't work as well as it should.

It can easily happen to me and sometimes it's just because I've got busy and haven't quite eaten everything I need to.

I can't suggest that you take an additional multi vit because they are designed for daily doses only and we are all different with different needs but I find it has helped me alongside more focus on my diet.

B12life profile image
B12life

That bluish ring is alarming. Sounds like you should get to a doc asap. As someone mentioned could be DVT.

Now isn’t that odd. I had the most excruciating pain, bone pain, in my tight foot big toe knuckle just over a week ago, with the knuckle a deep pink, almost red colour, dry sensitive to touch and making walking uncomfortable. I did think of gout but unlike when I had that twenty years ago it wasn’t a throbbing pain. I used codeine and Voltarol which did the trick.Before that went though I started falling about when standing, always with right leg not operating properly. I found I was dizzy lying down so after two days of that checked it with GP. No real solution there. It gradually went away.

Then the flu started. It isn’t covid, four negative flow tests, and deep cough developed, no temperature though. Just had the most horrible night of coughing. My diaphragm is sore from the effort. Covonia dose at wife’s insistence.

Gabapentin for the nerve pain, codeine for anything else, a comfortable warm bed, occasional whisky, plenty of fluids and a b12 shot for luck.

I still feel rough.

I have written off last week and am prepared to write of next week.

We have been free of everything for the past couple of years, covid free too. My retired GP mate has been the same. We are paying for it now.

Whatever makes you feel better, or even you think it might is worth a try. This too shall pass.

Nackapan profile image
Nackapan in reply to

Yrs we had similar. Lft negative.However many more variants around abd plenty of false negatives

We both took over 2 weeks to get through it .

My husband rarely ill abd he was shocked.

Hearing g alot of thus .

Jillymo profile image
Jillymo in reply to

The whisky sounds good.

The big toe was not only red but very swollen so much so my toenail was digging in my skin ! It's gone down a bit this morning, I took everything and even slapped a mophine patch on.

It was my stopping my Lansoprazol that caused a flare of uric acid. I thought by stopping them it would help my absorbtion. Stupid me I shant be doing that again in a hurry.

I only had one vaccine which made me bad so didn't have another or the boosters. 😘

Jillymo profile image
Jillymo

It's back to bed for me but thank you all for your support.

☕ 🚽🧻🛌 😴 Zzzzzzzzzzzzz

BarryBuchy profile image
BarryBuchy in reply toJillymo

There is a product Italian researchers developed called Berberol. It is used to lower uric acid levels with a combination of Berberine and Milk Thistle! A useful web site is goutpal.com

Jillymo profile image
Jillymo in reply toBarryBuchy

Hi BarryBuchy,

I cant say I have heard of Berberine but I have taken MilkThistle in a liquid form in the past. I shall take a look on the site I most certainly dont want another flare up - boy oh boy gout is so painful.

Thank you for directing me. 👍

We you are as bad burned as scalded. I don’t have reflux problems anymore, not since the fundoplication 13 years ago. Before that I needed a wheelbarrow to get the PPI tablets. I was on Esomeprazole at the end. It felt really odd not needing them as just the day before I had been chewing them like sweeties. There were so many other things that surgery corrected, but it was probably the reason for PA and b12 injections five years later.There is always a down side.

Jillymo profile image
Jillymo in reply to

I am waiting to be seen by a gastrologist In Bath who seems to have knowledge with regard auto-immune conditions. ( We will see )

I have a rather substantial Hiatus Hernia so I am told and a lump in my abdomen that nobody as yet has explained ! The reflux during the night can be nasty and leaves me wheezing for days after but I have learnt over the years what foods to avoid. It's the hard fats that seem to upset me.

I too feel my medications have contributed to my PA ! I am also prescribed a high dose of diuretics 3 times a day which could be contributing to my low vitamin levels. Thank you for your input.

scnuke profile image
scnuke

I have never heard of using lansoprazole as a primary treatment for gout. It is well known to aggravate gout. It is a proton pump inhibitor and is sometimes given to protect the stomach from the erosive effect of high dose steroids or other medications used to treat gout, but not as an actual medication to help treat or prevent gout. I know how painful the flare ups can be. Hope you are on the mend soon.

Jillymo profile image
Jillymo in reply toscnuke

The lansoprazole is not prescribed for gout, it is prescribed because I have to take aspirin plus it helps with reflux due to a hiatus hernia.

I thought it would help with B12 absorbtion if I stopped the lansoprazole but by doing so it increased my uric acid levels causing a flare of gout in my joints. I am pleased to say I am feeling better today.

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