What problems have you had with Tamoxifen?

Posted by rosiemolano @rosiemolano, Apr 19, 2018

I was switched from Anastrozole to Tamoxifen due to hair thinning and joint pain, now I'm have intense itching and anxiety.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

I was on Tamoxifen for two years and had itching, dry skin, and occasional terrible leg cramps at night. My doctor switched me to Exemestane (Aromasin) and now I have joint pain, tingling fingers, and insomnia. The joint pain and fatgue was disabling, and finger tingling disconcerting, so my doctor did a vitamin B test and found out I was low. Ive gotten shots to bring it back up and the joint pain is a lot better now.

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I was on Tamoxifen for four and a half years. Started in 2008 at 48 years old. My side effects were hot flashes, hysteroscopy endometrial ablation, possible cause of blood clot, dry skin and thinning of hair.

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i was put on Tamoxifen in 2011 after having a lump remove from my breast, classified as a stage 0 non invasive ductile carcinoma. I was to be on it for 5 years but after 4 years i had a stroke. When my breast surgeon found out about that he immediately took me off the Tamoxifen. No reason was found for my stroke, - my cholesterol has always been good, BP good, just slightly over weight, no diabetes, . So could the tamoxifen be the problem and am i pretty much safe from having another one? I otherwise didn't notice any side affects other than maybe some weight gain.

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<p>Have been taking Tamoxifen for about one year. My cholesterol and triglycerides have tripled. Anyone else have this happen while taking tamoxifen? Also high blood pressure that was very controlled for 10 years is also high again. Just reaching out to see if others have experienced the same effect.</p>

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@ktpalm29

<p>Have been taking Tamoxifen for about one year. My cholesterol and triglycerides have tripled. Anyone else have this happen while taking tamoxifen? Also high blood pressure that was very controlled for 10 years is also high again. Just reaching out to see if others have experienced the same effect.</p>

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Hi @ktpalm29, welcome to Connect. You'll notice that I moved your message about tamoxifen side effects to this existing discussion. I did this so you can meet others, like @bwag, who have talked about high blood pressure, cholesterol and tyiglycerides. Click VIEW & REPLY to read through past messages.
I'd also like to invite @jeannie53 @lisman1408 @geronimo1 @beku and @francine6829 into this discussion to share their experiences with tamoxifen.

KTPalm, you may also be interested in these discussions:
- Letrozole and Cholesterol https://connect.mayoclinic.org/discussion/letrozole-and-cholesterol/
- Tamoxifen 10mg vs 20mg https://connect.mayoclinic.org/discussion/tamoxifen-10mg-vs-20mg/

What has your oncologist suggested to get your numbers under control again?

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I have joint pain with with Tomoxifen- not as bad as Fermura but still present

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@colleenyoung

Hi Rosie,
I moved your message to the Breast Cancer group because I think you'll get more responses here. I'm tagging @brianphilip @cindylb @kat9606 and @eliseb who've shared their experiences with tamoxifen, and they may have had similar symptoms as you described such as itching and anxiety.

Choosing between the various aromatase inhibitors and Tamoxifen usually comes down to which side effects you can or prefer to tolerate. Did you only try anastrozole or did you try any of the other aromatase inhibitors? How are you managing the itching and anxiety?

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I am having anxiety and significant hair thinning from Tamoxifen, but a huge mood improvement over the AI's in my case. I'm happy on the tamoxifen even with the anxiety and hair loss and a few other things but I'm finding it tolerable and it makes me feel much more peaceful and hopeful to know I have a medication that gives me protection from recurrence. It hasn't been easy, and this comment board has been so helpful to get through this last year.

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@francine6829

I have joint pain with with Tomoxifen- not as bad as Fermura but still present

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I had the bone and joint pain from the AI's and when I failed to tolerate them and moved to Tamoxifen there is still some residual joint pain which as I understand it is not the Tamoxifen. I have osteoporosis already and Tamoxifen is known to have a positive effect on the bones...I'm not a DR. so don't take my word for it! Just repeating what I've been told by my MD who was thrilled to find that I could tolerate Tamoxifen.

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@bwag

i was put on Tamoxifen in 2011 after having a lump remove from my breast, classified as a stage 0 non invasive ductile carcinoma. I was to be on it for 5 years but after 4 years i had a stroke. When my breast surgeon found out about that he immediately took me off the Tamoxifen. No reason was found for my stroke, - my cholesterol has always been good, BP good, just slightly over weight, no diabetes, . So could the tamoxifen be the problem and am i pretty much safe from having another one? I otherwise didn't notice any side affects other than maybe some weight gain.

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The rare but serious side effects are stroke and blood clots or DVT from Tamoxifen. That said I'm taking one baby aspirin with my tamoxifen to try to prevent that. I hope you are doing ok now?

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Tamoxifen is also associated with a slightly increased risk of uterine cancer and other changes.

"Tamoxifen results in a spectrum of uterine abnormalities including benign alterations such as endometrial polyps, endometrial hyperplasia, endometrial cystic atrophy, adenomyosis, and uterine fibroid growth as well as malignant transformation into endometrial carcinoma and uterine sarcoma[4–8]."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2482152/
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