new to PA: hi all was diagnosed with PA... - Pernicious Anaemi...

Pernicious Anaemia Society

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new to PA

Blundermum profile image
2 Replies

hi all

was diagnosed with PA in november and had loading doses over 2 weeks. started to feel well over Christmas but in decline already. Tingling in fingers, muscle aches and broken nails which had all improved.

Asked for and got injection last Thursday (9 weeks after first set) but symptoms still the same and now stomach problems back. When I need to go to the loo its urgent and have had a few near misses. not ideal in the busy workplace. can't shake off persistent cough either.

i was feeling/looking so well 1st January onwards just to be back where I started 4 weeks later.

can anyone advise?

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Blundermum profile image
Blundermum
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2 Replies
Linda730 profile image
Linda730

Hi Blundermum, I feel for you. In actuality, they should have continued with the loading doses, but I don't know if your doctor will be agreeable. Shots should continue until neurological symptoms don't improve, which depends on you. At least you have guidelines doctors might follow in the UK.

Don't let the doctors office talk you into waiting. Tell them your symptoms are back and you still need your shots, not every 8 weeks, but every few days (or whatever works). I'm in the US and currently inject myself 2x a week after years of too few shots, and finally I'm actually improving. I was diagnosed almost 25 years ago. Don't be passive...push for what you need.

Others should reply soon with more specific advice, but know we are all supporting you!

Ritchie1268 profile image
Ritchie1268

Hi Blundermum.

I have just posted for some advice as I'm now struggling similar to you.

I was diagnosed with PA, B12/Folate dificiency last year.

Kept a diary as symptoms returned after only 3 days of injection.

You're not alone & there are amazing people on this site to help.

Good luck & try to stay strong.

Ritchie

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