Pernicious Anaemia Society
15,895 members11,135 posts

I am new here

I have recently been diagnosed with pernicious anaemia and have had first loading injection. Mentally feeling much better as there is a reason for how I feel, just noticing an exacerbation of pins and needles and tinnitus and some abdominal bloating which is new for me; should I report this or is it normal and will reduce as treatment continues.

22 Replies
oldestnewest

Hi, welcome.  Many people feel worse whilst loading, myself included. Some have symptoms they didnt even have prior to diagnosis and others report an all be it short lived period of feeling so much better.It isnt a regulated response to the injections from any of us. 

At this early stage i would say do nothing just keep a note of the improvements and any declines whilst loading, it will hopefully give you some indicator of what is working and also it might help at a later date if your injections are stopped and you feel you have benefitted from them, and subsequently would like your gp to continue them.

Do look through previous posts, there is a mine of information within them - if you have the mental strength to trawl through them! Lol 

Dont hesitate to ask any questions as there is sure to be someone who can give you answers.

1 like
Reply

My GP said I would have no further blood tests and be on injections from now on every 3 months after loading. I was told symptoms may recur before next injection due and it may take time to feel better. I will be monitored so I will deal with things as they present. Thanks for the tip about noting symptoms as I struggled to give a good history to my GP who told me that concentration and memory are often affected. Will read more posts but it is a lot of info to take in at once!

2 likes
Reply

welcome welcome  have you signed the petition  (see below) as you may find there are some troubles ahead when getting b12 injections when you feel you need them. depends a lot on your gp.

Reply

Thanks I may be dim but I can't find petition, will look through site again.

Reply
1 like
Reply

you.38degrees.org.uk/petiti...

1 like
Reply

Found one but it has been archived.

Reply

Signed

Reply

Sounds like you might actually have a gp who knows what they are talking about re b12---- hang on to him!

3 likes
Reply

Welcome to P.A.S. The bloating is a result of low or no stomach acid. A gastroenterologist told me that is something that P.A patients have. I would Google it "ACHLORHYDRIA" The NHS do not treat it--- you have to find your own treatment.  I used Betaine Hydtochloric and pepsin capsules at first (Amazon)  I. Now use a water-based probiotic and raw sauerkraut, And it works perfectly. 

1 like
Reply

Thanks will try sauerkraut as I have a German friend who lives locally. Unsure what a water based probiotic is but do eat probiotic natural yogurt from time to time, will eat more if it will help.

Reply

If your German friend can make some sauerkraut for you--great, BUT the cabbage MUST be organic. And it must be eaten RAW not cooked (YOu can look up a recipe on Google) THere is only one water-based probiotic and it is called SYMPROVE Unfortunately expensive -Google it and read all about it After a few months I was able to cut down the daily dose considerably.  I'm afraid the good yoghurt does not work at all for me. I think it is probably good for normal stomachs, but not low acid ones.  GOOD LUCK!

1 like
Reply

If, like me, you blanche at the price of Symprove, I've found that something called Bio-Kult works as well.

My preferred treatment for achlorhydria is about 40ml of lime juice (in fizzy orange or tonic water) taken with each meal.

2 likes
Reply

Yes, I do blanch, and I have really given it up now. But when I was in such a bad way with the tummy problems, I didn't care about the expense!  Thanks for the tip about  Bio-Kult and lime juice cocktail. I shall try them both.

Reply

Thanks so much for all your help, will try out the lesser expensive first and see how I get on.

Reply

Hi asaund,

I'm late getting on here and everything has already been said but I can assure you that there is life after P.A. as, after 45 years, I'm still "clivealive" at coming up to 75 years of age.

I wish you well and hope your symptoms will soon settle down.

4 likes
Reply

Unfortunately the loading doses often make the symptoms worse before they begin to improve. I think it's part of the body healing itself, suddenly finding it's got some B12 to use, instead of being starved of it. It does get better, but a good idea to keep a diary noting the date of the injection, and the symptoms as and when they occur.

1 like
Reply

Thank you will do this. I have got used to notes due to memory problems!

1 like
Reply

Memory problems also part of B12 deficiency. Do hope you will soon feel better.

1 like
Reply

"just noticing an exacerbation of pins and needles and tinnitus"

My understanding is that pins and needles and tinnitus are normally considered to be neurological symptoms.

Do you have other neuro symptoms. See links below.

b12deficiency.info/signs-an...  See Symptoms checklist

"My GP said I would have no further blood tests and be on injections from now on every 3 months after loading. "

Uk recommended treatment for B12 deficiency with neurological symptoms includes loading doses for as long as symptoms continue to get better then injections every 2 months.

Detials of UK treatment can be found in

1) BCSH Cobalamin and Folate guidelines

2) BNF (British national formulary) chapter 9 section 1.2

This link below, contains similar info to BNF in Management section.

patient.info/doctor/pernici...

1 like
Reply

Have made notes of this info to discuss with GP. Thanks

Reply

Hi,

Had problems putting links in for symptoms lists and couldn't edit post.

b12deficiency.info/signs-an...

pernicious-anaemia-society....

See Symptoms Checklist

Reply

You may also like...