Tamoxifen and neuropathy?

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PurpleCat
PurpleCat Member Posts: 358

Almost 3 years into Tamoxifen, including a brief stint with Letrozole, and I've started noticing some pain and tingling. Mostly in my feet, but sometimes other areas as well. I've been having a hard time keeping on top of my exercise and stretching routines, and have been assuming the symptoms are related to being stiff and generally out of shape, but it occurs to me that it might be a Tamoxifen side effect. Anyone with similar experiences? I know it can happen with chemo, but I never had chemo, just the antihormonals.

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  • ThreeTree
    ThreeTree Member Posts: 709
    edited November 2021

    Purple Cat - I don't take Tamoxifen; I take Letrozole and I experience tingling from time to time. Some of it is from the Taxol I had, but I get more since I started the Letrozole. What I have read is that fluctuating and/or low estrogen levels can cause body tingling, so I chalk it up to the low estrogen. Apparently tingling is a menopausal symptom that I never knew about. I'm 68 and went through menopause a long time ago. Mine was fairly easy, so I have been surprised at the numerous body effects that low estrogen can have when we take these anti hormone drugs. I would assume that your tingling is from the Tamoxifen, just off the cuff. I really sympathize, it is no fun!

  • Waves2Stars
    Waves2Stars Member Posts: 158
    edited November 2021

    You might ask your primary care to run some labs. Low hormones can cause issues with vitamins and minerals. Low B12 and some electrolyte imbalances can cause pins and needles, burning or cramps. Hopefully it would be an easy fix for you

  • ThreeTree
    ThreeTree Member Posts: 709
    edited November 2021

    PurpleCat - Glad Waves2Stars mentioned the electrolyte issue. I meant to bring this up in my previous post also. I had to go to the ER several times, because along with pins and needles, I would get limb weakness (all 4), leg cramps, my heart would race a little bit, and this feeling would come over me of "this is just not good and I need to do something asap" (almost a sense of doom, but not quite that bad). Each and every time I was basically just fine, but they found electrolyte imbalances (low sodium and potassium) and they would give me potassium pills to take right then and there. They told me to add more potassium rich foods to my diet and I have, and I have to say, even when I get pins and needles now, I don't get all the other symptoms I used to get at the same time. I have a bottle of coconut water every morning and then work in a lot of bananas, potatoes, and acorn squash in particular during the week. Bananas are touted as being high in potassium and they do have some, but the coconut water, squash, and potatoes have twice as much. You might want to try adding a lot of potassium to your diet and see if the tingling improves. I also have canned soup now a few times a week and I think that has helped the low sodium problem, so there's that too. Adding that packaged soup has not affected my blood pressure, so here and there, I think it's OK and maybe a good thing, to add things like that if you don't normally get a lot of salt.

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