Concerned about the side effects of anastrozole

I had osteopaenia going in to treatment, and my experience(s) while on Anastrozole for 7 months, including my left knee totally blowing out and putting me in a wheelchair for 6 months, has led me to the very likely conclusion that the knee collapse (of an already fragile joint) was exacerbated by Anastrozole. I started out with the intention of being treated, start to finish, by Genesis in Davenport, given very bad interactions at Trinity in Moline since 2018. I wouldn't even go to Trinity for a simple mammogram after 2018, but the pandemic upended my plans to avoid the Illinois side of the river and the 33 radiation treatments I was told I needed, which was a fairly lengthy process, as you can imagine, did not help, so, having been told that I didn't even need an oncotype, I interpreted that to mean that my b.c. was a garden variety tumor that could just as easily be treated locally. Not sure that was a wise decision, but it is why I ended up back at Trinity and not at Genesis, where I had already selected a surgeon (Dr. Hartmann), who, among other pandemic crises, totally disappeared without a word to the patient(s) as to where he had gone or when he would be back. (It was very weird that those of us whom he was supposed to operate on were not told anything about the sudden cessation of his office. Since I had done some reading on optimal times to have surgery and knew that simply "hanging around" for months wasn't ideal, I tried to be positive and gave in to the idea of going to the much-closer Trinity for the radiation, despite bad experiences there during a breast biopsy in 2018. The reason I have not gone forward with more active treatment for bone loss is that I am "borderline" currently and the discussion(s) on taking biphosphanates (among other things) and on the veracity of Dexa scans are everywhere. With a T score of -2.2T currently, I filled, but did not take, such a pill. It was prescribed me by my endocrinology team at my request. I was told to step up my calcium intake (with D and K) and did. (There is some information out there about whether or not an uptake in calcium can contribute to heart attacks and strokes, so taking 600 mg. in the morning and 600 mg. at night is about all I've done, so far. My next trip in to see the endocrinology team is in early May. Meanwhile, I've been locked into major dental work ($10,000) since November and was glad I could truthfully say I had not taken the biphosphanates that they feared might weaken my jawbone prior to their implant procedures.

Tamoxifen will not "inflame" the joints as the A.I. drugs do. And I AM "old," as my doctor so tactfully pointed out, With any luck, we will both get even "older." My mother---a 4-shots-a-day diabetic---lived to be 96 with no dementia and played bridge until almost the day she died. (She once flew to Hawaii to play in a tournament that Omar Sharif was playing in). I always figured I'd get diabetes, so I began watching out for that a long time ago, but the b.c. cancer diagnosis came from out of left field and left me totally unprepared. Like my mother, I am a fighter, and I won't go down without a fight, for sure. I feel normal and fine right now and, since I stopped taking all pills to "protect" me my energy levels have returned and I have recently done the Chicago International Film Festival, Nashville, Sundance, and, just recently, SXSW. I filed 34 different reviews from Austin in 8 days, attending 3 movies a day and writing until (sometimes) 4 movies a day. (I enjoyed telling my friends that I might get to meet Ryan Gosling on March 10th if I got the Red Carpet for that one) Not being able to stand (or walk) is not something that I can live with, and the Anastrozole definitely put me in a world of hurt in so many ways. Just for the World Premiere of "Stormy" (the documentary now showing on Paramount Plus, I think, I had to stand from 3:15 until 5:30 p.m. waiting for her to show up. I post on my own blog (WeeklyWilson) and on TheMovieBlog and have been reviewing film non-stop since 1972. I have no intention of letting cancer stop that, but it sure put a crimp in my style last year when I could neither stand nor walk.

Rozv, your experiences on Anastrozole mirror my own. I also tried Tamoxifen, and can attest that it is easier to tolerate than Anastrozole, but when I was told I HAD to step up my intake from 10 mg. to 20. mg., things went South for me. I was on 10 mg. from April 23, 2023 until June 23, 2023. I had told my Texas oncologist that I was only going to take 10 mg. (not 20) and the reason was the Italian Women's Study of 700 Italian women who took a reduced dosage. I actually was only taking the 10 mg. every other day, so my total weekly consumption was 40 mg. On this dosage I experienced dryness and a constant urge to urinate. Nothing felt normal from the waist down, but I did not have the extreme fatigue or the UTIs that I experienced once I moved up from the 40 mg. a week to 140 a week. I was told by my Texas doctor's office that my faith in the Italian Women's Study was misplaced, because I was comparing apples to oranges in that their tumors were "in situ" and mine had broken through. Therefore, I agreed to step up to 20 mg. daily and that was NOT a good idea for me. I immediately had EXTREME fatigue. I could only be up for 3 hours at a stretch. I began having what felt like UTI infections and they were not able to be quelled by Amoxicillin or another strong drug prescribed by my physician. (I also tried something OTC that did nothing but turn my pee orange). This started before New Year's Eve and, after 10 days of this constant burning and itching and urinating I was headed to the convenient care when it dawned on me that I should probably call, instead, the OB/GYN my oncologist had made me get an appointment with, to keep tabs on the possibility of a thickening of the uterus (uterine cancer symptom) from Tamoxifen. I had been on her appointment calendar for 9 months. She refused to see me and I was reduced to tears, while driving to the convenient care facility. Her scheduling person called me back and told me to call my oncologist, which I did. He had me drive to another town and leave a urine specimen and that was when and how I got the second strong antibiotic. The 2 strong antibiotics then turned into a fungal infection, which also required medication and an office visit. I quit taking everything on Aug. 30, 2023. Am I concerned that I might have a recurrence since my onco score was 29. Of course, but I can't say that having non-stop UTI infections is a good trade-off, since I have a good friend who died from one that went septic. (As did the former Charlie's Angels star who died at 65 from one.https://www.womenshealthmag.com/health/a35155137/actress-tanya-roberts-death-urinary-tract-infection/).

So, my choices are: to take Anastrozole and be wheelchair bound and suffer agonizing joint pain OR risk endometrial cancer or a blood clot or sepsis, as described above.

When you need "protection" from the "protection" it is time to take stock and analyze the risks versus the benefits, which is what I have done at the ripe old age of 78.

I hope you will get the care you deserve with your new doctors.

I was 76 years old when I was put on Anastrozole. I had given birth to two children (one a 9 lb. boy) and had an abdominoplasty (major surgery), plus various dental things (root canals, crowns) but the pain I experienced from Anastrozole was a 10 on a 10-point scale and the worst pain I have ever experienced from anything. I was up in the night rummaging through my bathroom drawers trying to find something---anything---that could help with the pain. For instance, I knew I had left-over oxycontin from a root canal, but, in reading the contraindications, I learned that you cannot take it with a benzodiazepam and I take Lorazepam nightly (1 mg.) to sleep, so that was out. Throughout this frustrating (and painful) experience I was never asked how I was doing by my oncologist and I also found myself on the phone talking to 3 places (Medicare 2x; Des Moines; and the Trinity Hospital billing people) trying to sort out why Medicare had denied payment for the bone scan that my oncologist finally got around to ordering for me that took place in late May. (Keep in mind that I should have been given a bone scan prior to starting on Anastrozole, which I had been on since Feb. 1, 2022.) My back was absolutely killing me and the weird thing was that I had never had back pain prior to taking Anastrozole, although, when I delivered my second child (at the age of 42) and they injected my spine with the epidural, the pain was significant and the anaesthesiologist had commented that the reason it hurt so much more in 1987 than in 1968 was because "You're a lot older now, and you probably have arthritis in your spine." I credit that latter comment with being the reason I could just barely function with the pain in my back, whereas I had never in 76 years of life had what you would call "a back ache," although there were times that I would go lie in the hottest bath water I could stand to alleviate some stiffness. But pain? Yikes! The pain was horrific, and just never quit. I had insomnia for the entire 7 months of faithfully ingesting 20 mg. of Anastrozole daily, and nobody (but me) really seemed to care. Nevertheless, I persevered, doing what was asked of me, pushed to the breaking point. The breaking point came on 9/15/2022 when I was simply walking along a Chicago street on my way to meet a girlfriend for lunch. There was no injury, like a fall. My left knee simply quit working and became extremely painful, to the point that I had to call an Uber to get home. (The restaurant was going to be a 1.8 mile walk, round trip, so it was not a huge distance. My girlfriend had selected it to save me the horrendous cost of driving my car to the joint and then having to pay the inflated parking rates charged in Chicago.) i struggled down Michigan Avenue to a convenient care that is roughly one block away, after the Uber delivered me to my Indiana Avenue digs. I was X-rayed (no break) and the doctor who saw me said I needed injections, which required a more specialized facility that could give those injections. I had seen ads for a joint pain clinic located in Oak Brook and called them. They sounded like exactly what I needed, but it meant driving there in Rush Hour Chicago traffic (I don't live in Chicago full time, but have a place there.) I made an appointment and gave myself 3 hours to make it there and it took all but 15 minutes of that 3 hours. The Dr. on Michigan Ave on 9/19 (4 day after the injury) had given me a prescription for pain medication, but I was so crippled up that I couldn't walk across the street to the pharmacy to pick it up, and I know almost no one in Chicago who might have helped me. So, I drove to Oak Brook where a board certified doctor who had once practiced in Dubuque (Iowa) X-rayed me again and recommended that I come in for a series of injections over time (14 in all). The problem with that was that I was leaving for Texas for the winter in less than a week. I had to secure a cane and a wheelchair and I decided (after consulting with my hometown doctors at the OAR in Moline, IL) to hope that the problem was a meniscus tear that might repair itself in time. (My Moline doctors said that they could SEE cartilage on the surface of my patella in their x-rays). Therefore, I was reduced to hobbling with a cane, bracing my left knee and rationing the few Tramadol (50 mg.) pain pills I was able to secure. I only got 15 of them, total. These had to be used judiciously to help me as I attempted to cover SXSW, which required me to stand for long periods (not to mention walk in and out). I was Red Carpet for "A Small Light," a National Geographic special about the woman who hid Anne Frank and even had an interview with the principal actresses in that award-winning piece, but it was tough. I was just fortunate that a nice elderly lady, seeing my plight, let me enter the theater in advance of the arrival of the cast to walk the Red Carpet, and then I was able to hobble back out to the Red Carpet at the Stateside Theater when they actually showed up. The other side effects of the Anastrozole included brain fog, blurry vision (attributed to dry eyes by the otphalmologist), teariness, mood swings, excruciating body aches and pains in any damaged joint and in my back, the aforementioned insomnia, and vivid violent nightmares. My surgeon, (who actually did see me and acted like he cared whether I lived or died), after listening to my side effects, went to his office phone himself and called my oncologist's office, saying, "You need to see this patient." I don't think my oncologist would have bothered to meet with me on October 6th (3 days after my first post-operative mammogram) if Dr. McKenzie had not called. During the meeting with me Dr. McKenzie, hearing of my logical concern about recurrence (the oncologist had refused to order an oncotype, so I had no data to work from) suggested that I might request that a ki67 test be done on the tumor to gauge its aggressiveness, which would give me some peace of mind. During the October 6th meeting that resulted from the surgeon's phone call to the oncologist's office, I (finally) got to ask the oncologist face-to-face for the ki67 Dr. McKenzie recommended. His response was to say, "I won't order that for you. You'll have to get someone else" and to get up and walk out! I had tried to tell him of all of the side effects I was experiencing at an earlier point and his response then was to say, "Don't take it then" and to get up and walk out. When I saw him on October 6th (my last time of putting up with this guy) I was in a wheelchair and he adamantly denied that the Anastrozole could have been a precipitating factor in my crippling, saying, "You're just old." I now doctor in Iowa City (a 3 hour drive) and in Texas, where the attitude is quite a bit more in line with the compassion that we all deserve.

I am so sorry you have had all these terrible side effects of this medication. I honestly was going down the same road with it and I told my dr no more. I had a knee replacement about 10 years ago and the medicine was affecting the other knee and joints. My oncologist told me to stop with the anastrozole and I am now awaiting what my next medication will be. I do not want the cancer to return but I cannot live the way I was on that medicine. It affected every part of me. My oncologist stated my blood tests reveal I am not far into menopause, and he thinks that may be why my I'm experiencing the problems I am. If the next one does the same thing, I will trust God and come off of it. I cannot go 5-10 years in that condition. I pray you get some relief and help. Praying for you.

Happy to hear that you are having few side effects.
I had every side effect in the book and then my left knee blew out, leading to injections of anti-inflammatory drugs (32 ml of one; 6 ml of Durolane; Tramadol for pain) and I could not walk for over 6 months. After the meniscus-tear-like symptoms abated, my left knee (which was injured in a bicycling accident in 1997) did not return to "normal." I have to brace it to walk at all, and it doesn't appear that it is ever going to be "right" again. The thing is, I had been in a nationwide study (the MOST study) of those with a family history of arthritis and/or previously damaged joints from 1997 to 2020. I made numerous trips to Iowa City, Iowa to the University of Iowa Hospitals and Clinics and was X-rayed (hips, knees) and had MRIs of my left knee each and every time, to track the disintegration of my/our fragile joints. With that history, I should never have been given any of the A.I. drugs and told the only side effect was "a little stiffness in your hands and fingers when you wake up first thing in the morning, and it goes away when you quit taking it." Because I am also a Type II diabetic I also know that my bone density declined from -1.4T to -2.4T during this time, which is from osteopaenia to osteoporosis, which gives me a whole new set of problems to deal with. It's not enough to have to worry about my onco score of 29 and diabetes and fibromyalgia, now I get to debate whether or not to take biphosphanates for bone loss/osteoporosis. I'm in the midst of $10 grand worth of dental work right now from 2 teeth simply splitting below the gumline, and my dental insurance tops out at $1500 annually. So, while I am happy to hear that others are dodging the Anastrozole bullet, it got me right where I live, and taking Anastrozole has caused me a great deal of pain, suffering and money. A good doctor would have told me to avoid A.I. drugs and possibly recommended Tamoxifen, which does not "inflame" joints and attack your bone density to quite the extent that Anastrozole, Laetrozole and Exemestane can, Obviously, my oncologist in a smallish rural area was not great, not informed, and not helpful. He only saw me 2 times in 8 months and he still denies that the side effects I mention above had anything to do with taking Anastrozole from Feb 1, 2022 until my knee blew out (Sept. 15, 2022). I've changed doctors, but the damage is done and appears to be irreversible.