Hyperhomocysteinemia or lack of vitamin 12

[BK47]

has anyone suffered from inability to absorb vitamin B12 due to either the Lupus or Methotrexate injections?

I’m really struggling with pins and needs and total exhaustion and I’m wondering if this is my problem. It’s impossible getting to speak to dr or rheumy or nurse so could do with advice please.

[MEGS53]

Hi and welcome to this abs fab group 💖

I’ve got EDS not lupus, but many of my symptoms are very similar.

I have ‘probable’ pernicious anaemia as I have gastric parietal cell antibodies and a low vitamin B12. It would be defo PA if I also had intrinsic antibodies. I’m prescribed B12 jabs every 10 weeks.

Hope this helps, please feel free to ask any other Qs.

Take care

[BK47 in reply to MEGS53]

Thank you for replying. I’ve not heard of EDs , there are so many strange conditions about. But it’s good that we have this site to share our concerns. Thanks again and hope you are as well as can be x

[MEGS53 in reply to BK47]

I didn’t know methotrexate interacted with the B12/folate pathway. PMRpro has given good advice - as always! - which I hope helps you feel better.

All the best

[PMRpro]

"... patients treated with methotrexate require concurrent folic acid supplementation and are uniquely at risk for vitamin B12 deficiency and hyperhomocysteinemia due to biochemical processes involving folate, methotrexate, and vitamin B12."

Folate is B9, you often need B12 too though. No reason why you can't get some from the pharmacy to see if it helps. You can get sublingual forms which are much better absorbed than ordinary oral forms - in trials almost as good as injections.

The inability to get any form of healthcare advice in the UK is getting more than just silly!

[BK47 in reply to PMRpro]

Thank you so much for replying. I’ve got so low and exhausted with all the pain and pins and needles. I will try anything now. Off to get some B12 and see if it helps.

[PMRpro in reply to BK47]

And start the process of at least a telephone consultation - it might take 3 weeks but you might have a bit of evidence about taking B12 by then!

[michaellasmith Administrator]

Hi there BK47,

Sorry to hear you are suffering, but great to see some helpful advice from the members.

I have attached a publication that you may have seen before, but could be useful to you, it discusses Methotrexate and Folate, which PMRpro has mentioned below -

lupusuk.org.uk/wp-content/u...

Let us know how you get on with B12 and if you manage to see or speak to a doctor.

Warm regards,

Michaella

[Suvi8901]

Let’s be careful with terms here!👆

Hyperhomocysteinemia is a state in which too much homocysteine is present in the body. The main cause of hyperhomocysteinemia is a dysfunction of enzymes and cofactors associated with the process of homocysteine biosynthesis.

Vitamin B12 deficiency is often related but they are NOT the same conditions!

I have SLE (for >7 years) and and suffer vitamin B12 deficiency despite taking daily, high dose supplements!

My GP informed me that my serum vit B12 levels were very low. WHY? I had an absorption problem.🥹😱

The parietal cells in the stomach lining (and in my intestines) were being destroyed due AI disease and hence I LACK intrinsic factor which means I cannot absorb B12 properly!

Hence I now have 3 monthly IM (intramuscular), high potency vit B12 injections and feel much better.

You could be suffering intrinsic factor loss from your gut?? like me and this must be checked out by the docs!

Get those serum B12 levels done asap + get loss of intrinsic factor autoantibody tests done to confirm.👆

Trust this helps?

[BK47 in reply to Suvi8901]

Thank you so much. It is all confusing but I will ask those questions on Monday as I’ve managed to get a telephone appointment with a doctor 👏

[DD1999]

Hi, I have EDS, Lupus, POTs, and have pernicious anaemia… I take an oral spray for B12 and so far have not needed the injections.

[BK47 in reply to DD1999]

Thank you for the reply. I’ve got a phone appointment with a doctor on Monday so am hoping to get some definitive tests done asap.