advice please: I have been diagnosed... - Pernicious Anaemi...

Pernicious Anaemia Society

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advice please

Wanda123 profile image
11 Replies

I have been diagnosed with PA. Doctor 8s advising to start folic acid before my first injection. I think I have read that this is not right. Could you tell me what to say to the doctor. Also is it normal to have pains from your feet soles up to your head. pins and needles. cramps. bone type pain. jelly legs. Everything hurts.

Thank you for having me

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Wanda123 profile image
Wanda123
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11 Replies
Nackapan profile image
Nackapan

So many symptoms are on' the list' of low folate and low b12 . Have you also had vit d tested and iron and thyroid.

Yes I thought b12 treated then folate. I expect it's a matter of waiting g until first b12 injection. Folate is only prescribed for a few months then 200-400mcg is adequate as a maintenance dose once your blood test shows levels up.

B12 need to br continued though whatever .

Wanda123 profile image
Wanda123 in reply toNackapan

Thank you. Vit d ok. iron is getting done Friday again. Thyroid etc ok. 😊

fbirder profile image
fbirder

Treatment with folic acid while there is a B12 deficiency can exacerbate any neurological damage. ncbi.nlm.nih.gov/books/NBK1...

Wanda123 profile image
Wanda123 in reply tofbirder

thank you. very informative.

fbirder profile image
fbirder

Folic acid is one of the many kinds of folate. It is easily converted to other kinds. b12science.com/B12Science/D...

It's not only women trying to get pregnant who should take folic acid. Any female of childbearing potential is recommended to take 400 mcg of folic acid a day. medicinescomplete.com/#/con...

Cinders70 profile image
Cinders70

I also had low folate and was given 5mg per day for 4 months. It really helped. Within three days I was sleeping soundly, also not having to get up to pee four times a night. This was in the week before I stayed the loading B12 shots.

I now just take some over the counter 400 micro grams per day folic acid tablets.

Wanda123 profile image
Wanda123

Apparantly my folate level is very low along with b12. They are testing iron and for coeliac next. Then starting b12 injections, but they wanted me to start taking folic acid first. I'm not going to do that as I already have lots of neurological problems. Interestingly in Jan I woke up with bruised big toe from no incident. 3 days later shingle rash and severe illness. shingles attack every month for four months. 130 antivirals. tested for covid in June nasal was negative.Positive for Epstein Barre. I have felt worse the last 4 weeks than all that. I feel like my bones are on fire. really bad stomach problems and severe fatigue and vertigo. I'm really looking forward to start of b12 injections as I feel like I'm going to collapse all the time. Sorry for long post.

Bellabab profile image
Bellabab

BNF says:-

Side-effects Frequency not known

Abdominal distension; appetite decreased; flatulence; nausea; vitamin B12 deficiency exacerbated

Cautions

Should never be given alone for pernicious anaemia (may precipitate subacute combined degeneration of the spinal cord)

bnf.nice.org.uk/drug/folic-...

I suggest you point this out to your GP.

fbirder profile image
fbirder

youtu.be/MzT-iU8UIwo

Vps1980 profile image
Vps1980

Do you get stabbing pains at all?

Wanda123 profile image
Wanda123

yes all over head face neck back legs feet. tingling and numbness and currently very sore spine and tummy issues.

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