Folate levels: Good morning all. So I... - Pernicious Anaemi...

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Folate levels

Ritchie1268 profile image
9 Replies

Good morning all.

So I mentioned the other day that after a blood test my folate was very low. Even with a regular 400ug maintenance dose & trying Methylfolate along the way, with SI B12 every other day for almost 2 years now.

Those who know my story will know I believe my extremely high dose of OxyContin for many years caused my PA amongst many other problems.

One of those many other problems was zero testosterone levels, of which I had HRT but stopped it due to it thickening my blood & causing severe acne.

After being off OxyContin over 4 years, Methadone almost 2 years & no HRT for over 2 years, I still have acne.

The Dermatologist prescribed Dapsone around 4/5 months ago. This is used to treat leprosy & other skin conditions.

For the past few weeks I have been suffering the effects of low Folate. Dizziness, aching, fatigue etc etc.

I looked through the leaflet of Dapsone last night & it said this:

"It works by stopping the production of folic acid in certain bacteria, therefore stopping them growing."

Do you think the Dapsone is causing the low Folate despite taking folic acid regular, or am I reading too much into it?

Many thanks as always.

Ritchie

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9 Replies
fbirder profile image
fbirder

No, I don;t think the dapsone will be affecting folate levels. It kills bacteria by preventing them from being able to synthesize folate. But humans cannot synthesize folate anyway, so the dapson can't have any effect.

Ritchie1268 profile image
Ritchie1268 in reply tofbirder

Thank you as always fbirder!

Looks like i did a 2+2=76 😁

Nackapan profile image
Nackapan

My daughter has ti be 'really on it' ( her words ) with keeping folate levels up. I seem to remember you not that keen on greens ?

Chickpeas and fortified cereals another good source also make ect in smoothies.

Orange juice .higher supplement for a while

Hope the levels raise quickly and you feel less symptomatic soon.

Ritchie1268 profile image
Ritchie1268 in reply toNackapan

Thank you Nackapan.

Yes you're right, but my partner has been force feeding me them for a while now 😁

I eat a lot more greens than I used to, so found it strange that my levels were very low.

I'll see what the next test shows in 3 months after the 5mg of folic acid daily.

Thank you.

deniseinmilden profile image
deniseinmilden

Hi!

If you look up Dapsone in the British National Formulae it advises taking extra additional folic acid in pregnancy.

bnf.nice.org.uk/drug/dapson...

While technically sulphonamide antibiotics should be OK for most people, those of us with folate absorbtion issues do seem to have a bit of a problem with them and if I take any from that group I definitely need extra folic acid in addition to the methylfolate that I usually take to supply my folate needs.

Have they warned you to be careful of iron anaemia and potentially reduced oxygen carrying ability of your blood? (They should have!)

Really we ought to register any side effects on the yellow card scheme so they get a better idea of the % of people who are affected.

Ritchie1268 profile image
Ritchie1268 in reply todeniseinmilden

Hi Denise & thank you.

I read that on the leaflet with the Dapsone.

I had a blood test before he prescribed them to make sure I was "okay to take it"

He did say it can cause shortness of breath & if that happened to stop taking it & let him know.

I mentioned I have PA & would it be a problem, he said it's not a problem.

I'll see how it goes & if it causes any issues, I'll just accept I'm a spotty 52yr old teenager & accept it 😁

deniseinmilden profile image
deniseinmilden in reply toRitchie1268

I had reasonable skin success with oxytetracycline and I don't think it caused any lockup problems...

They use it less these days but might be worth considering as an alternative as (forgive my presumption) I doubt you are going to have children now - it colours embryonic teeth!

Ritchie1268 profile image
Ritchie1268 in reply todeniseinmilden

I had that first Denise & it didn't help.

If this doesn't work I won't take any other medication & just accept it.

As you say, I'm hoping I don't have anymore kids! And my modeling days are long gone 😁

deniseinmilden profile image
deniseinmilden in reply toRitchie1268

It's a pain - literally - so I hope you find a solution and don't have to suffer it! x

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