Pernicious Anaemia - Positivity Please!

[ecg15]

Hi all,

I was diagnosed with PA yesterday and start injections in two weeks. I wasn’t feeling too worried about this as although my symptoms make me feel pretty crap, I was hoping this could be fixed and it doesn’t affect me all day every day. However, after doing some research about PA online the stories are all so negative! How the injections don’t work, how much people continue to suffer etc. Does anyone have any positive stories to share about PA and the injections?

You should bet your loading injections first. For me, from memory, it was every other day for about 5 or 6 jabs and then 3 monthly afterwards. I now get mine every 8 weeks. They work well for me. I forget I have PA. My thyroid is buggered but that’s a different story. Be aware, with one autoimmune condition, there is a possibility you’ll get more unfortunately.

Don’t listen to the negative people, it can be managed but you need to take charge and get informed because the NHS is woefully inadequate at managing it

I recommend joining PASOC and getting on the message boards and learning about the need for other vitamins (preferably methylated)that aid absorption (Folate, vit C) of B12.

@Tomnooktoldmeto its funny you mention that. I’ve had my 6 loading doses and I did feel I was feeling a bit better, a bit more energy and just generally a bit better. I had been taking folic acid, vit D and magnesium each day too. However two days ago I added a b complex and added one without b6 due to bladder issues. I’ve felt so jittery and twitchy today and wondering if it might be the methylated vitamins in the b complex.

I felt rubbish til I had my loading doses, 3 injections per week for two weeks. Half way through the course I literally felt like someone was pulling me up with a piece of string, I could feel myself recovering and it was wonderful to feel well again. However a month later I dropped back a bit, then I picked up again - and repeat. My recovery wasn’t linear but after about 5 months I stabilised and I’ve been fine ever since.

I have 12 weekly top up injections at my surgery, but often have private top-ups in between (many beauty salons and aesthetics clinics offer them, I pay £30) because I’m convinced every 12 weeks is not enough for some people. But you can’t overdose on B12, any excess is flushed out in your urine.

I was tested for pernicious anaemia but don’t have it. The doctor could find no reason for my B12 deficiency, and I am not vegetarian. However some people, particularly women, don’t absorb B12 very well, and still need injections.

It shouldn’t be the methylated vitamins as this literally means they are just broken down further and therefore more bio available, you mention folic acid

if you can you need to take folate in the form of methyl folate, folic acid can block receptors if you carry a faulty copy of the MTHFR gene which can be involved in the whole problem which is why some people derive very little benefit from treatment because they’re not taking or taking the wrong form of other vitamins to aid absorption

sadly GP’s then do blood tests and find adequate circulating levels which the body is having trouble breaking down because they have a faulty methylation process

I’ve had it for about 10 years (I’m 34) I’ve had two babies in this time and have a full time very demanding job. I get tired in the evenings and feel it when my injection is due, but I have a fairly normal life really. I could almost forget I have it. I did in fact forget my injection and I’m now 2 weeks late for it, which is hitting me hard. As long as I keep on top of it all is good. I have mine every 6 weeks.

My mum and nanna also have it and nans 80, she’s fitter than most peoples nans so I’m not overly worried!

I buy vitamin b12 from Germany where it is sold over the counter like any other vitamin I inject on average every month now having done my loading doses a couple years ago after the GP refused to give me anything but tablets even though my blood test was showing that I was sliding towards PA. I did not have the changes to my blood cell structures to confirm a diagnosis of PA but I had neurological symptoms as well as very low B12 which did not resolve either with oral supplementation or three diet so all I would say is don’t be afraid to look at whether or not three monthly injections are good for you I suspect they probably will not be so look at all options available and getting the B12 and jabbing yourself also make sure you supplement with foliate

I was diagnosed in 2011 after dizzy spells and numbness in my feet. I'm OK with an injection every 12 weeks. I believe my late gran may have had it as she used to get awful dizzy spells. It was not picked up at the time.

I was diagnosed in 2011 after dizzy spells and numbness in my feet

Same here. My B12 was right at the bottom of the normal range but luckily my doctor realised I still needed injections.

God it’s such a minefield. I just don’t know how often is enough, what I should be taking/not taking alongside it. I bought my own from Germany and planning to self inject. Guidance says every two days until symptoms resolve, I am worried that every two days is too often. What supplements are the right ones for me. So confused at this stage.

Every two days for two weeks is the nhs recommended losing dose - don’t worry it’s too much, you will excrete any excess

just start the jabs you will feel so much better

Thanks. I’ve had my nhs loading doses, but I know the NICE guidelines are every two days until symptoms resolve, and lots of people advocate in the groups that this is the only way to recover!

Have had PA for about 20 years, have no Intrinsic factor. I have injections every 12 weeks, occasionally feel extra tired just before they’re due. Generally absolutely fine, no issues at all and gp happy to provide.

My diagnosis was 30 years ago. I have injections every 6 weeks after referral to hospital some years ago. I work full time, single parent, busy life, regular exercise. No issues really as long as I have my injections. Other intervals didn’t work very well for me.

Yes indeed - it’s safe to continue as needed. B12 doesn’t store up in the body like certain other vitamins. I dropped to several times a week for months after my loading doses and now usually do about once a month

May I ask about the symptoms and how you got diagnosed, please? Was it a blood test? Thanks and wishing you well x

@frenchfancy81 I was completely exhausted and had a lot of headaches. Sometimes feeling nauseous too. I kind of ignored this and plodded along until one of my fingers twitched constantly for a week, then my toe started. Then I started to get a kind of tingling feeling in my fingers and toes. I went to the GP and they done two rounds of bloods - one to check for b12 deficiency and one to check for intrinsic factor. Don’t expect your GP to be overly helpful if you do get a diagnosis, though. I have had to seek pretty much all the information I know about PA from the internet.

@TheShiningCarpet did you go from loading doses to a few times a week? Or did you keep going with every other day for a period of time?

Extreme tiredness although was working ft and had two children,dog and sick mum. Mouthful of ulcers for weeks, it was a dentist who suggested B12 then had bloods and some sort of test at hospital when I swallowed a tracer and they checked how much I excreted to see if I could store B12. Fine since diagnosed and topped up.

OP, I don't take any extra vitamins or supplements, just B12 injections.

I did two weeks loading (every two days) then dropped to a few days a week - I did that for a few months then reduced to monthly

How long did it take for everyone to start feeling better? I’m not on jab 7 every other day and feel like I’ve been hit by a bus.

I started to feel better towards the end of my loading doses, but then went up and down for the next few months. I would say it took about 5 months before I felt consistently well. But that was nearly 10 years and I am absolutely fine now

@Thursdaygirl this gives me lots of hope!