After quite a lot of reading I’m starting to put together the pieces. I could very well still have PA but I more likely expect that my Pregabalin could be affecting my b12 and iron levels. I’ve been on Pregabalin for at least three years, and part of that time (about 2 years) I was taking a PPI.
Since then I have completely stopped the PPI. I remember thinking, “I’ve stopped the PPI, why is my b12 not improving yet?” I still wondered this a year later, even after treatment.
No one had advised me that pregabalin could cause deficiencies like this so I had no reason to question it until I saw a post about it on this forum.
I plan to mention it to my neurologist at my next appointment.
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Purplegirl2
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Purplegirl2, PA is an autoimmune condition - it doesn't go away. The B12 deficiency that PA causes and which leads to the symptoms associated with PA can be treated, with injections.If you are on injections then your B12 is now coming directly from your blood - ie using anything that would cause an absorption problem in the gut isn't going to affect your B12 levels. Absorption problems affect transition of B12 from your food into your blood but injections put it directly into your blood and by-pass this step entirely
I completely understand your reply, I agree. I failed to mention that I waited 3 months after stopping my PPI, after diagnosis with megaloblastic anemia & b12 deficiency. I expected my b12 levels to increase a lot through diet, I ate a very high b12 diet those months. I also took an oral vitamin. But I was tested later and it did not increase much. Then I started on the monthly injections for 6 months. I think why I did not improve with the monthly was because the injections were not often enough. But I did wonder why my diet was not sufficient in those first three months. Of course PA could be it. I am NOT dismissing PA.
My treatment, regardless of whether I stay on the Pregabalin or not, will be exactly the same. I will keep getting weekly injections.
But I do have a responsibility to talk to my Dr about the Pregabalin if it was found in a research study to significantly lower b12 through diet.
If the Pregabalin is the only issue; then awesome! I don’t have to be on injections for life.
It could be both Pregabalin & PA, in that case I stay on injections, I am totally fine with that, whatever can make me feel my best is fine with me.
I hope I did not give the impression that my treatment would change in any way.
“Treatment with phenobarbital, *pregabalin*,primidone, or topiramate was associated with lower vitamin B12 levels compared with the entire group of patients.”
“Treatment with most of the commonly used AEDs is associated with reduced folate or vitamin B12 serum levels and is a risk factor for hyperhomocysteinemia. ”
I hope more studies can be done on these medications.
Do not get me wrong, I am NOT dismissing the idea of me having PA.
My treatment will stay exactly the same.
But if I have been taking a medication for years that is indicated to potentially lower b12 levels significantly (through dietary intake), I have a responsibility to look into it and mention it to my Dr.
Maybe I stop taking the Pregabalin and it turns out I still must have PA, then that is telling.
Otherwise, I stop taking the pregabalin (after enough injections where I am feeling my best), maybe my b12 does not lower and I can easily get my b12 from diet alone.
Then that clearly is the best outcome.
Otherwise, I discover I must stay on b12 injections for life, which I am fine with doing if it means I can be feeling my best.
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