1. < Breast Cancer

Letrozole and TMJ?

Posted by gerarda @gerarda, Feb 16, 2023

Hello,
I’ve been on Letrozole for 3 months and got a severe flare up of TMJ. Almost been 2 weeks now. (normally 2 days, 3 times a year) It also includes my neck and have been diagnosed with occipital neuralgia. I read in one of the TMJ articles that a sudden drop in estrogen could make you susceptible to TMJ.
Anyone else have something similar?
I’m a petite woman and wonder why there’s only one dosage of Letrozole. Why would I need the same dose as someone twice my size? Doesn’t make sense to me.
Thank you

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maryh62 | @maryh62 | May 9 7:46pm
In reply to @bloncape "I’m sorry to hear about your problems with TMJ while taking Letrozole. In 2020, after taking..." + (show)
@bloncape

I’m sorry to hear about your problems with TMJ while taking Letrozole. In 2020, after taking 1/2 dose of anastrozole for one month, I began to take a full dose. I had MANY side effects, one of which was TMJ. My quality of life was very poor. Being new to this medicine, I was not aware that an aromatase inhibitor could cause TMJ. My former oncologist did not acknowledge TMJ or most of my other complaints as being caused by anastrozole. I stopped taking the drug after 6 weeks at full dose. Nearly all of the side effects, including TMJ, went away after some time.

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Hi Bloncape,
I am experiencing the same reaction from my Mayo oncologist. He said TMJ is not a SE. I took 2 AIs and Tamoxifen over the last 10 months. Both of the first 2 times I stopped, the headaches went away. I suspect they will now too as I'm stopping the drug. It's very disappointing.

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1 reply
bloncape | @bloncape | May 10 9:05am
In reply to @maryh62 "Hi Bloncape, I am experiencing the same reaction from my Mayo oncologist. He said TMJ is..." + (show)
@maryh62

Hi Bloncape,
I am experiencing the same reaction from my Mayo oncologist. He said TMJ is not a SE. I took 2 AIs and Tamoxifen over the last 10 months. Both of the first 2 times I stopped, the headaches went away. I suspect they will now too as I'm stopping the drug. It's very disappointing.

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Hi Maryh,
I’m sorry to hear that you experienced headaches and TMJ. Joint pain is a well known side effect of aromatase inhibitors. Since the jaw is a hinge-type joint, why do oncologists deny that TMJ can be caused by taking an AI? If it goes away after stopping one of these drugs, it seems to me that there is a causal relationship. BTW, I also had daily headaches which also subsided after stopping anastrozole. The decision to stop taking these drugs is stressful and not easy to make, but quality of life matters. For some of us, the physical price we pay is too high.
It’s most discouraging, that tamoxifen and aromatase inhibitors have been prescribed for 50 and 25 years, respectively. In all those years, drug companies have not been able to develop effective breast cancer treatments with fewer and often life-changing side effects.
I wish you a good quality of life for many years to come.

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ppat4pr | @ppat4pr | May 11 11:00am

I was on it for 5 years without any T-Mobile, which had bothered me in the past. So sorry you are having issues.

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1 reply
ppat4pr | @ppat4pr | May 11 3:22pm
In reply to @ppat4pr "I was on it for 5 years without any T-Mobile, which had bothered me in the..." + (show)
@ppat4pr

I was on it for 5 years without any T-Mobile, which had bothered me in the past. So sorry you are having issues.

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Trouble not T-Mobile Sorry My ipad had a mind of its own

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risagee | @risagee | May 12 4:51pm
In reply to @bloncape "I’m sorry to hear about your problems with TMJ while taking Letrozole. In 2020, after taking..." + (show)
@bloncape

I’m sorry to hear about your problems with TMJ while taking Letrozole. In 2020, after taking 1/2 dose of anastrozole for one month, I began to take a full dose. I had MANY side effects, one of which was TMJ. My quality of life was very poor. Being new to this medicine, I was not aware that an aromatase inhibitor could cause TMJ. My former oncologist did not acknowledge TMJ or most of my other complaints as being caused by anastrozole. I stopped taking the drug after 6 weeks at full dose. Nearly all of the side effects, including TMJ, went away after some time.

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I, too, went through a serious recurrence of TMJ after being on Letrozole for about 3-4 months. At 6 months now — serious anxiety, insomnia, heart palpitations, and easily bruised skin. I feel fragile physically and emotionally…is this really worth it, I wonder..? Before BC, I was a reasonably fit and healthy 60 year old. Some days now I feel like I’m 80 🙁

REPLY
1 reply
bloncape | @bloncape | May 12 8:32pm
In reply to @risagee "I, too, went through a serious recurrence of TMJ after being on Letrozole for about 3-4..." + (show)
@risagee

I, too, went through a serious recurrence of TMJ after being on Letrozole for about 3-4 months. At 6 months now — serious anxiety, insomnia, heart palpitations, and easily bruised skin. I feel fragile physically and emotionally…is this really worth it, I wonder..? Before BC, I was a reasonably fit and healthy 60 year old. Some days now I feel like I’m 80 🙁

Jump to this post

An oncologist told me that one third of breast cancer patients can’t tolerate aromatase inhibitors. Another third can stay on it, but need more drugs to treat the side effects. The remaining third have few or no side effects. I’m so sorry to hear that you are having such a difficult time on Letrozole. I had planned to take anastrozole for 5 years, as prescribed, but I had a number of the side effects that you are experiencing and also felt like I had aged in a short time. I was told that AIs reduce your chance of recurrence by 40 to 50%, but it is never 0%. I decided to stop after 3 months at age 70. The decision to continue or stop taking an AI is difficult, but no one else can make for us. I am not suggesting that you stop taking Letrozole. I just want you to know that you are not alone.
I wish you well.

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1 reply
risagee | @risagee | May 13 8:34am
In reply to @bloncape "An oncologist told me that one third of breast cancer patients can’t tolerate aromatase inhibitors. Another..." + (show)
@bloncape

An oncologist told me that one third of breast cancer patients can’t tolerate aromatase inhibitors. Another third can stay on it, but need more drugs to treat the side effects. The remaining third have few or no side effects. I’m so sorry to hear that you are having such a difficult time on Letrozole. I had planned to take anastrozole for 5 years, as prescribed, but I had a number of the side effects that you are experiencing and also felt like I had aged in a short time. I was told that AIs reduce your chance of recurrence by 40 to 50%, but it is never 0%. I decided to stop after 3 months at age 70. The decision to continue or stop taking an AI is difficult, but no one else can make for us. I am not suggesting that you stop taking Letrozole. I just want you to know that you are not alone.
I wish you well.

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Thanks so much, bloncape…I so appreciate your message! Not sure what I’ll do, but definitely share your frustration with oncologists not acknowledging many side effects as a result of these AIs. I’m afraid to stop taking it, because in addition to the invasive carcinoma cells that were removed from my right breast, I have a bigger mass of non-invasive carcinoma that was not recommended for removal from my left breast (“unlikely” to become invasive). < sigh> Whether or not Letrozole can alter that recurrence risk is unclear, alas.
In any case, I’m sticking with this awful medication for now and hoping for the best!

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