Letrozole and TMJ?

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.

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.

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

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

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 🙁

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.

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!

I had issues with Letrozole at first and tried taking it as prescribed, had severe BM issues and didn't wish to live in the bathroom. Ended up taking 1/2 pill daily and still have had side effects that I can tolerate thus far (1 year so far). Not interested in taking other AI medications after researching them. Am having some TMJ issues now and am glad I saw your post. Bottomline, you know your body, it's trying to tell you something and it's not all in your "head"!