Pernicious anemia advice/ reassurance

[ChloeW92]

Hello,

I have had pernicious anemia/ b12 deficiency for 4 years and have been self injecting for 2.5 years. I have found injections every 3 weeks and 3 days keeps me healthy for 99% of the time. Occasionally though I have major drops where I am

-unable to go to work

- I can’t get my head around things and get stressed

- extremely tired

- emotional wreck

- angry

- headaches

- metallic taste in mouth if I do too much

- cold

- blue lips

Do other people get these symptoms so rapidly? I can be fine one day then 48 hours later I’m a disaster.

I find it can take up to 3-4 days to get back to normal. Is this the case for other suffers?

I am tempted to increase my frequency of injections but I am worried it could be a slippery slope? If I changed to SI every 3 weeks, would in find in 2 years time that I need to increase frequency again or do you think once you find the perfect amount it remains that way?

Has anyone found that doing certain things make them need to inject more or is it random?

I am a highly active fell runner, cyclist, climber etc and haven’t noticed any link between level of activity and b12 symptoms but there is clearly something that affects it?

Thank you so much for any advice/ experiences you are able to give.

Chloe

[MrsTuft]

You are very active and are having symptoms so why not just inject more frequently? Easy peasy! Obviously check folate, ferritin, vitD, hormones, etc., too. x

[JanD236]

I was diagnosed with PA around 8 years ago and it took me about 2 years to find an injection frequency that suits and supports my active lifestyle (I’m a long distance cyclist).

I started off with monthly injections from my GP, which were ok and gave me a good week or 2 but then my energy levels tailed off towards my next injection.

I then started si weekly which was almost good enough but I had to choose whether to inject the day before which of my longer ride (these are on Weds and Sun) for best performance.

In the end I started si twice weekly (Tues and Sat) and as far as cycling is concerned I’m as fit as I’ve ever been.

I’ve never felt the need to increase si frequency from twice a week and occasionally wonder if I could manage on less. However, I’m nervous to try as in the early days of twice weekly I did try stretching out the days between injections and each time it set me back for many days, if not a week or 2.

So I’d rather not inject twice a week but after 6 years or so of this I’m just grateful to be able to live my life as I wish to. I’ll therefore continue at this frequency.

My advice would be that you find the frequency that works for you so that you are able to live life on an even keel without highs, lows or crashes

Good luck!

[ChloeW92 in reply to JanD236]

Thank you for such a wonderful response!

Your advice really means a lot and I will certainly be following your recommendation! X

[Hidden]

Im at the beginning of journey but just wanted to reply and ask if you think stress may be a factor, I've heard stress depleted b12 faster and puts more of a strain on the body? Maybe it's when you've got something particularly stressful going on?

[ChloeW92 in reply to Hidden]

It’s not something I have personally noticed but I think I need to start paying more attention. I’m definitely going to start writing a symptom journal and perhaps just highlight any stressful days too to see if I can spot any patterns. Weirdly I have never noticed a link with bad symptoms and more exercise?!

[Hidden in reply to ChloeW92]

Yes it's strange, I hope you get to the bottom of things.I think it's fantastic your so active, I hope I can get there one day as I m so so weak, my heart is very weak and it's a struggle just doing some housework. Maybe it's hormone fluctuations having some sort of impact on symptom flare ups? There's a lot of mysteries to PA it seems

[Technoid]

Have you tried high dose tablets between injections to see if they make any difference? 1k or even 5k? Some with PA can get some B12 via passive absorption and that might be enough to holdover between injections. Guessing you already tried it though.