Has anyone dealt with the decision to stop Anastrozole due to joint pa

I am sorry for your situation which I can strongly identify with. I am trying to carry on to the halfway point of my five years and then will talk with my oncologist again. When I had to take a treatment break a year ago because of the severity of bone/ muscle pain, she hinted that at the halfway point it might be worth revisiting the risk/ benefit issue. I hope you get helpful insights on this issue.

@jamicovone , I had a mastectomy in 2019 & started Anastrozole shortly thereafter. I took it for a total of 2 1/2 yrs + Boniva injections (2 total). I don’t recall when side effects started as I don’t buy into what is stated by others about meds or written. I give my own body a chance to work or work with meds. (Note: I do not have to take and prescriptions). I started having hip pain and initially thought it was something I had done / but didn’t go away. Then I got trigger finger. My Then oncologist (I have new one now) just poo poo’d it. It got so bad I could hardly walk and getting in and out of the car was excruciating. I bought an Oval 8 device on Amazon for my trigger finger - fixed it ! I talked with my new oncologist and said I wanted to quit Anastrozole after 2 1/2 yrs. We did an Onco test and my numbers were low for reoccurrence so he agreed. He said that we would alternate every 6 months between Mammo & MRI. I feel I’m getting checked thoroughly. Quality of life if very important and it is an individual decision based on your numbers, faith in Dr and You bring proactive and advocating for yourself to the doctors. Be vigilant and strong. If you’re not comfortable with information they tell you. Research , come to this forum and learn. Doctors have a license to Practice and we want the best outcome. I’ve been about 3 yrs off meds and doing well. 6 yrs this September from surgery. 💪🏼. Blessings to you. It’s a hard and personal decision. 🙏🏼❤️

I had surgery June 2023 then chemo (oncotype positive) and radiation and then put on Anastrazole in Dec 2023. Initially a few problems (headaches, rash, acid reflux) that would clear in a couple weeks. The pain in joints and muscles started about month 3-4. Mild but progressed to the point where there would be days where I couldn’t do much the pain was so bad. It was constant in back and hips but mobile other places - today the left ankle, tomorrow the right hip etc. After 9 months, oncologist said “you shouldn’t have to live in pain” and took me off. After a month (and a derm visit to be sure the rash wasn’t autoimmune) he started me on exemestane. Said most people do well on it. I fully admit, for me at least, it doesn’t cause the pain like the Anastrazole. My back still bothers me and I kind of have to “unfold” and stabilize myself after sitting but I don’t have the muscle and joint pain. There are other side effects for me however that are causing problems - extreme fatigue and now at the 8-10 month time frame, insomnia. Unfortunately, while I feel these are side effects of the exemestane, none of the doctors feel that’s the case. So currently I’m living with them and doing the best I can.
So coming off Anastrazole should definitely considered. Whether to start a different drug may be the problem.

I tried all three hormone suppressors. I had debilitating side effects from all of them. My doctor told me to take a break and after 1 month, I felt so much better. I had tried taking the pills at different times of the day. I had tried taking a 1/2 dose every day. Nothing worked. Now I take 1 full pill (Anastrazole) every other day and have very little side effects . My doctor would obviously prefer that I take it every day but I couldn't live with that so the doctor is happy that I found a dosage and schedule that works for me. Taking a break for one month really helped.

I am 42 years old. I started letrozole in March. I stopped taking the pill about 45 days ago. I don’t feel great but the pain is more tolerable. I have agreed to try one other AI option before trying to find another non-traditional route. Please know - that we all know - your pain is real. It is debilitating.

I was diagnosed 2 years ago and am almost 2 years on letrozole.
At first I felt fine but slowly the limb pains started . I had wrist pain- diagnosed as de Quervains tenosynovitis and this settled after a steroid injection. I have a right middle trigger finger which isn’t too bad yet but will hopefully settle .
The pain in my butt has been excruciating at times and has been diagnosed as spasm of my piriformis muscle. Massage helps this and I’ve been shown stretching exercises which also help.
My heel pain has been diagnosed as gastrocnemius spasm and again massage and stretches really help.
2-3 months ago I was going to try a’different AI but now I feel I can control the pain with stretches , massage and I also do Pilates .
I have been helped by an excellent physical therapist who looked at each pain individually and devised a plan .
I do hope others get help with their pains .
I have 1139 tablets left to take .

I have been on anastrozole for almost one year. This stuff seems to build in intensity. At one point I felt like my heart was beating out of me, I was having leg cramps all the time, trigger fingers, trouble sleeping and fatigue, always feeling like I was on edge. And it makes me grumpy! I switched to letrozole for a couple of weeks with the same issues. Exemestane, made my palpitations worse. My GP suggested I stop for 3 week and reset it all. There was some concern that I needed a break after the chemo and monoclonal antibodies. and I may have had residual toxins. Adding the anastrozole, was just too much. I felt poisoned. After a 3 week pause, I felt almost normal and started the Anastrozole again. First few weeks were good, then back to the same ole stuff. Sometimes I just can't take it and skip one night here and there.
Recently I have been attacked by bees ( 13 in 6 weeks...why are they after me? Anastrozole making me a target? it is the only new thing that I put in my body!) I have had to take prednisone along with other meds to keep down the reactions. Which seemingly put me back in the same uncomfortable situation with being too aware of my heart pounding. Now I am taking a few days off again. For me, it is the only way I can cope. I have tried half pills. I may try taking one every other day. It must be more beneficial than none. I am a big supporter of the supplement DIM. I understand it helps the body remove all of the synthetic estrogens we get from environmental exposures. I eat Broccoli or Brussel Sprouts each day. Hug yourself each day for trying!

I so appreciate everyone sharing their stories. So much is similar to my wife's story. An oncologist at a major university whose stock answer is 'I don't know why you have pain'; I've never seen this before.' Why are some oncologists totally lacking in empathy or understanding? Our new oncologist at another major institution is fortunately much less dogmatic. Of course nothing changes the facts-if you need a med to improve your odds facts are facts. But it's also true that support helps. Briefly looking at the literature, 20-30% of women have a lot of problems with AI's, so why did our oncologist choose to say that my wife's pain was so unusual. This forum goes a long way to help women realize that they are not oddballs. Thank you all for sharing. It has helped. Best of luck to all.

I would love for some serious academic research to be conducted on attitudes and knowledge amongst medical professionals including Consultant grades surgeons, Oncologists, Nurses, Pharmacists etc . I think this might be revealing not just for patients but for all concerned. I am currently taking part in a study in UK , Roseta looking at compliance with treatment and will be very eager to see the results albeit this may not be for a couple of years yet.

I had terrible pain in my knees.
When it got so bad that I could not even get up off the toilet, I called it quits.