it gets worse before it gets better -... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

it gets worse before it gets better - experiences

5 Replies

Hi, my dad is on his loading doses (4 injections so far) and we suspect he's been deficient for a long time. The first injection made him super alert and energetic and then it started going downhill (I know it can get worse until it gets better). At the moment he is going through bad symptoms of terrible nightmares, insomnia, burning sensations in his feet, tingling, anxiety. It would be great to hear any advise on this - is this a sign that he should continue frequent (eod) injections until it gets better or how should he continue after the loading dose? Also I'm trying to reassure him that this is normal as the nerve endings are waking up, but would love to hear more facts about this stage or personal experiences from people who have this same experience. Thank you in advance!

5 Replies
Emmers5 profile image
Emmers5

Please reassure him that it often gets worse before it gets better. Especially if he's been deficient for a long time. For me it seemed to happen kind of in layers - like one set of symptoms goes away and that uncovered other symptoms and then those went away. Don't give up!

Sleepybunny profile image
Sleepybunny

Hi,

Many on forum report feeling worse when they start treatment.

I had been symptomatic for many years when I started treatment and am still improving years later.

Some UK forum members report that Level of treatment from NHS is not enough and they resort to self treatment.

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

Narwhal10 profile image
Narwhal10

Hi Mora35,

Welcome here, I recommend keeping a diary of symptoms - so what your Dad had before injections and throughout. Noting methodically from head to toe including psychological signs.

Yes, some of my symptoms worsened (vertigo, neuralgia) but I also noticed the pins and needles/grip strength in my hands improved.

Dr Joseph Chandy’s book Vitamin B12 deficiency in clinical practice discusses a reversing out phenomenon where symptoms may worsen as healing occurs I.e. you reassuring your father that this is normal as the nerve endings are waking up.

chrisbuy63 profile image
chrisbuy63

It might be worth talking to GP because the B vitamins need balancing and too much of one does deplete others, I found my burning feet responded to another B vitamin called pantothenic acid Vitamin B5 , it is found in different foods like meat (beef, fish, lobster pork, chicken), sunflower seeds, dairy products (yogurt, milk, cheese, etc) eggs, avocado, sweet potato [21].

Bacteria in the large intestine can naturally produce calcium pantothenate. Human breast milk also contains pantothenic acid [22, 23].

Bonjourtristesse profile image
Bonjourtristesse

Yes, I had terrible pins and needles after my first injection that lasted for days. I originally thought 'shit, what have I done'. As others suggest it seems to be nerves waking up. I had numbness in right toe and tingling in right little finger before I started injections.

Not what you're looking for?

You may also like...

does it get worse before it gets better

I have posted before as I have b12 deficiency (103 serum level), so here is the latest. After...

Worse before better / breathlessness

Hello, Since March I have felt out of breath. I thought it was covid, then thought it was anxiety,...
katamarang profile image

Help with Doctors

Hi there, I am looking for some advice. My husband has recently been diagnosed with Pernicious...
LeilaB2019 profile image

one last question ( hopefully)

I have finally managed to get an appointment with my GP where I hope to convince him to give me...

Feel worse rather than better!

I have had my sixth and final injection of my loading dose this morning and my next one is now not...

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.