Off Anastrozole and Letrozole after a year

Do you know what causes the joint pain? You'll probably be prescribed an aromatose like Letrozole, which has been used (or its predecessors) for at least 20 years. But in reading about it I learned that it is intended to kill estrogen. Lack of or low estrogen can (and usually does) cause joint problems, amongst other things. So I decided to not take it. But I'm nearly twice your age and not worried about getting more cancers, so you have to weigh the pros and cons of taking something that could worsen a pre-existing problem like you have. I do have more joint pain after surgery but I'm forcing myself to be more active, even going for short walks. I do some stretching exercises, and get out of bed each day whether I want to or not! (And if I'm being slow about it, my cat gets me up!) I'm so sorry you have all this happening in your 40's. I had Fibromyalgia then, still have of course, and also the beginnings of the spinal stenosis, and the only thing that helped WAS being active. When I was 40 we moved to a remote mountain valley, just the 2 of us, and built a two-story post and beam home, made gardens, shopped twice a year so it was not a life style that was easy on the body. Perhaps what got me through was trying to maintain my natural optimism; not easy when you're hurting all the time. With some help learned self-hypnosis (I was always too uncomfortable to do meditation), and it has helped a lot. At night, when trying to sleep, I first go over my day and noting all the negative parts, then say to myself, "But it will be better tomorrow". And then I think of good moments, even short ones like a hug from a friend, and concentrate on remembering those for a while. Important to breathe deeply while you're doing this.

Sorry, off the subject, but I feel for you.

I am finishing my four weeks of radiation. I had a lumpectomy with clear margins and no lymph nodes involved. I am 76 and have decided not to take anastrazole after researching all the side effects. I already have chronic pain and live alone. My risk is 8%. It is one I will take.

I was taking Anastrozole for about a year and 8 months but had developed mild carpal tunnel syndrome in both arms, trigger thumb on the left side and something called DeQuervain's tendonitis on my left arm which made it difficult to do much of anything. I had not had any issues until started taking of the Anastrozole. My oncologist said to try Letrozole but this only made things worse, so we agreed to stop for couple months to see if things improved. During the rehab period I did get a corticosteroid shot for the tendonitis as it was quite painful. After a couple months, these issues slowly disappeared so I know it was from the AI meds. When discussing taking Tamoxifen, the oncologist too thought that it may have the same impact so we decided to do 10mg instead of 20 mg hoping the side effects would not be as bad. I have been taking the 10mg for 4 mos now and while I have some of the more common side effects the muscle/joint types are much more bearable so I will stick with it for now. If things should get unbearable in regards to the muscle/joint issues going forward I may just decide to stop these meds but for now I figured something is better than nothing. At least the pains it caused did go away for most part in my case so I was happy about that. But yes, if I had stayed on it I would not be able to do a lot of things with limited use of my arms so this was the best solution for me. So, I do totally understand stopping these meds if they are so debilitating. I too had osteopenia prior to starting these meds so will see in my DEXA scan this year if it has caused more problems. I had been trying to take supplements and exercise with light weights and resistance bands but we'll see if this did anything. Good luck on your journey.

I hope this change of drugs works out for you. Sounds like it's more bearable. Thanks for sharing your story. I thought about tamoxifen. But I still have my uterus and ovaries. Doctor told me I would have to have internal sonograms (?) every three months if I went on it. I gave up on that idea, plus my surgeon told me my recurrence risk was small.
So here I am trying to get my knees better.
Good luck to you too.

Stay well!

i was in similar situation had lumpectomy and rad decided no AI scared of side effects: 2.5 yrs later it came back in same spot so mastectomy and now AI, no noticeable side effects so i have to wonder, could i have spared myself the mastectomy?? u never know
i am 73

Yes, Tamoxifen comes with its own set of side effects that are not that great. I had a hysterectomy years ago so felt it might be ok to try the Tamoxifen. I still feel the night sweats but they aren't really bad. I am taking Tamoxifen at night but maybe I should switch to morning. The muscle aches are still present in my shoulder/neck but a lot less and more tolerable than when taking the AI drugs. So, this much is tolerable. But we both know that sometimes the effects get worse in time when taking these meds so we'll see. But I too think that if things get worse with joint pain/muscle issues I would consider stopping. I do hope you can find something to help with your knees. Best wishes.

To you as well ❤️‍🩹

Hello, may I ask if that 8% number is a recurrence score, & do you know what your distant recurrence score is? All AI's it tried were not worth the pain, so my ONO thought to order an Oncotypre DX Breast recurrence report. It was determined that I too, could stop all the drugs.
My recurrence score is 13, and my distant score (risk at 9 years) is 4. I was HER negative. After taking these drugs for six months and stopping them for about six months, my knees are still hurting. You are a wise woman.

I have only met once with my MO prior to radiation. He told me my reoccurrence number was 8%. My onco score was 22. I, too, was HER2 neg. I have looked at all the side effects. I live alone. At my age I do not want more pain or debilitating side effects. I want age in place and not a facility. These factors and my trust in God have led me to my decisions.
Hope your adverse effects disappear soon.