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Pernicious Anaemia Society

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After extended the loading period...

Suncliff profile image
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Thank you to everyone who has helped me through the last few weeks.

I decided to continue loading since most of my symptoms hadn’t improved after 3 weeks with an injection every other day.

I’m now just over 4 weeks of loading and I am delighted to report that I am feeling a bit better. Spots are healing and I’ve not had any new ones recently. The headaches have stopped and I’m not eating every half hour! My eyesight has improved. The numbness in my toes and the pains/twitching in my legs has lessened.

My energy levels seem better. Still a long way to go but I am beginning to see a way forwards.

I’m continuing with loading for the time being.

I’m due to visit the GP in the New Year and I’m going to request some blood tests for vit D and foliate.

Can anyone suggest what else I should ask for? I don’t want B12 unless it is the active B12 test. I haven’t been tested for P.A. do I need this doing?

Once again thank you so much for your support

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Suncliff
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3 Replies

I think you should definitely be tested for PA, although I believe a lot of people who are positive test negative. It's not a terribly reliable test.

When I did my loading injections I injected alternative days until I felt improvement ( tinnitus went, feeling was coming back in fingertips & toes, hand tremor went) then I went to 2 days between injections, then 3, and so on. I thought this would be better than suddenly going to every couple of months and it worked well for me.

I suspect I have PA but tested negative. Not really bothered about it as it's easy to self manage after everything I learnt here.

Suncliff profile image
Suncliff in reply to

Thanks for your reply. I was wondering if the P.A. test was necessary. I don’t want a negative result because that would give my GP ammunition to say there’s nothing wrong with my b12 levels. Although taking the b12 has not resulted in dramatic results I am feeling better and some symptoms have improved so that’s all that matters to me.

The way you extended the days between injections makes sense to me. I couldn’t imagine going from every other day to once every 8 weeks. When I’m ready I’ll do something similar to you.

Can I ask how often you inject now and how long you’ve been injecting? I realise everyone is different but just to give me some idea.

Once again thanks for sharing.

Aileen

in reply to Suncliff

Ive been self injecting for a year and a half to 2 years. I do an injection every 7 or 8 weeks. I can tell when I'm getting low. I suspect I have P.A but came back negative. Not really worried as it's easy to treat myself and I rarely go to the GP.

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