1. < Neuropathy

Excess B12 possibly causing numbness and tingling

Posted by persistentc @persistentc, Mar 14 7:53am

At a recent visit with my PCP, I asked her to run some labs. One of them, B12, came back at excessively high levels. This can cause numbness and tingling in your hands and feet! I had been told that you can never take too much B12 because anything your body doesn't need is excreted in the urine. But after doing a little searching on the internet I discovered that Methotrexate, which I take for auto-immune issues, can cause the body to retain the excess B12. I have just started infusions of Simponi to replace the use of Methotrexate. I will post again after I have been off the Methotrexate, which my rheumatologist says can't happen for a few months until the Simponi kicks in. However, I wanted others to be aware of this possible cause. As a note, the PN did not start until AFTER I began taking Methotrexate, so I am pretty hopeful this may lead to some relief in a few months!

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 14 8:31am

Thanks for starting this discussion @persistentc. Sorry to hear you had the PN adverse side effects of Methotrexate. I thought I would share a reference on the topic for others.

-- Potential neurotoxicity associated with methotrexate:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11315891/
Hoping you can provide an update here in a few months!

REPLY
1 reply
celia16 | @celia16 | Mar 14 2:53pm

That’s very surprising. Thanks.

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michaelsz | @michaelsz | Mar 15 7:46am

Sorry to hear of your symptoms. Is it subsequence or consequence? Perhaps it is the underlying condition for which you take methotrexate that is causing the numbness or tingling? Or is it the methotrexate that is causing that rather than the B12?

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1 reply
persistentc | @persistentc | Mar 15 8:48am
In reply to @johnbishop "Thanks for starting this discussion @persistentc. Sorry to hear you had the PN adverse side effects..." + (show)
@johnbishop

Thanks for starting this discussion @persistentc. Sorry to hear you had the PN adverse side effects of Methotrexate. I thought I would share a reference on the topic for others.

-- Potential neurotoxicity associated with methotrexate:
https://pmc.ncbi.nlm.nih.gov/articles/PMC11315891/
Hoping you can provide an update here in a few months!

Jump to this post

Thanks for the link, John. I will definitely post again to let folks know, one way or the other, if this is indeed the case.

REPLY
persistentc | @persistentc | Mar 15 9:22am
In reply to @michaelsz "Sorry to hear of your symptoms. Is it subsequence or consequence? Perhaps it is the underlying..." + (show)
@michaelsz

Sorry to hear of your symptoms. Is it subsequence or consequence? Perhaps it is the underlying condition for which you take methotrexate that is causing the numbness or tingling? Or is it the methotrexate that is causing that rather than the B12?

Jump to this post

The Methotrexate prevents the body from excreting excess B12. My B12 results were at a toxic level. The underlying condition is Axial Spondyloarthritis, previously misdiagnosed as RA until the seventh (!) rheumatologist I am now seeing thought to check to see if I have the HLA-B27 allele (I do).

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