Concerned about the side effects of anastrozole

@einnoc What are you putting in your coffee ?! :einnoc What are you putting in your coffee ?! 🙂

Since I am a diagnosed Type II diabetic, I have been doctoring with an endocrinologist (Texas Endocrine Center) since 2017. I was 7.2 (A1C) and weighed 220 lbs. when I began with them. I am now 5.4 A1C and weigh 180 (and still trying to lose more weight.) I am 78 years old and 5' 2" (shrunk from 5' 2 and 3/4") and I joined a gym, primarily to swim in their heated pool. Unfortunately, the chlorine in the pool is so strong that I can only swim for 30 minutes before I get so dizzy that I fear I will pass out!

I have taken Ozempic AND Mounjaro and seem to have "plateaued" at around 180, which is way off from the insurance charts for people my age and height, which, last time I looked, said 147 lbs. I asked them about my bone density scores, since I knew I had osteopaenia going in. The first ones were obtained thanks to a good OB/GYN who had me get one at 2 year intervals, beginning in 2017.

Last trip in to the endocrinologist she did prescribe something, which, after I read up on it, I did not take. (A pill) I have now had 2 teeth split after routine cleanings. One required a root canal and a crown. That happened during the pandemic in 2020 before my 2021 b.c. diagnosis on Dec. 7, 2021. The second tooth split after cleaning on Nov. 16, 2023. I am in the midst of $12,000 of dental work right now, including a dental implant (#4 tooth), a crown on the tooth next to it, and a new filling under an old filling on a third tooth. I had dental insurance, which chipped in $1,500 for my "annual benefit." I will go in for the "twist test" on April 23 and, if I pass that, the dental implant will be installed. (In the meantime, I have not been able to chew on the right side of my head since November!). When I went to the endodontist (who is a doll!) he said I didn't need a root canal after all ($2,600 if I had), which was good news. He then sent me to "the best oral surgeon in Austin" and we had a very lengthy debate about whether or not I could even have a dental implant. The key thing seemed to be whether I had or had not taken ANY biophosphanates. Although I had filled the prescription, as requested by the Austin Endocrinology people, I never took any of them because I read up on them and it sounded like---given my score(s) then, which were close to osteoporosis but not yet there---I should maybe wait and see. I did, and I'm glad, or I could not have had the dental implant I need(ed) and, with the tooth immediately next to #4 (upper right) needing a crown, bridging was not a very viable option. I am a child of the 40s. I have a mouth full of amalgam fillings, which weaken enamel. Then I was put on Anastrozole for 7 months and my knee blew out and, possibly, it affected my jaw and teeth, as well. I am now taking lots of calcium (morning and night with the K needed) and I've been putting that stuff in my coffee daily that might help build bone---who knows? I also have done extensive reading on the inaccuracies of bone density exams. It seems to depend a lot on what machine is used and exactly how the patient is laid out and whether the patient moves and a whole bunch of other things. All I can say is that, thank God I didn't just swallow that biophosphanate pill when I paid for it and picked it up, or I'd be gumming food without an upper molar from now until the day I die.

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.

It is a known fact that aromatase inhibitors like anastrazole cause bone loss.

Menopause causes bone loss through the loss of estrogen. Anastrazole works by reducing estrogen further, below detectable levels.

Were you not put on a bisphosphonate during anastrazole?

Your scores weren't osteoporosis yet, as you know, and they may be borderline now, which can sometimes, for some people, mean no meds yet, but ask an endocrinologist.

Someo ne asked me if the decline in my bone density was caused by the pills or something else. I cannot say why it was -1.4T in 2017 when my OB/GYN had me get one and steadily declined. I knew I had osteopaenia going in to the treatment(s) and, in my own mind, my age (76 at the time) is certainly a factor, but the extreme effects on my fragile left knee have led me to believe that Anastrozole is a Major Culprit. My Illinois oncologist chose to disagree, saying, "You're just old." It is true that I am old (and trying not to become dead!) The only reason I have such good numbers is that I am a well-controlled Type II diabetic, whose A1C has gone from 7.2 to 5.4. My mom and all 3 of her brothers were diabetics and she was a 4-shots a day diabetic. (One of her brothers was early onset.) I have been doctoring at the Austin Endocrinology Center since 2017 and they told me my numbers since I began with them. My last one was -2.2T and osteoporosis usually starts at -2.4T or -2.5T. I am going to them soon for a new bone scan to determine what my latest reading is. I had bone scans in 2017, 2019 and 2023. Medicare will only pay for them every 2 years. In the case of the 2023 one, it had been 4 years and yet Medicare initially denied the payment, which it took me 2 days of calling to unravel. It seems to have been the oncologist's office coding it incorrectly, but, to find that out, I had to call Des Moines (billing agency), Medicare 2x, and then Trinity Hospital (Moline, IL) billing agency, which never answered the phone, so I went online and typed my inquiries. At the time, I was so laid up with excruciating bone pain (especially my back!) that it was real torture to be on the phone that long, but I kept at it. (Later, the Trinity person wanted to know the NAMES of the African American girls at Medicare I had talked to for hours! Who gets the names of the girls on the phone? As it turns out, they had such unusual first names that we had chatted about their unique names, so I knew that much, but---really? I now have to know the names of anonymous clerks at Medicare because you screwed up the coding? I wonder now if they screwed it up on purpose, since my Illinois oncologist seems to have made it his life's mission to NEVER order any additional tests, especially expensive ones, so he "won't get dinged by Medicare." (This told me by the radiologist on the case). I can report that it took me from May of 2022 until March of 2023 to finally get it approved and paid for by Medicare, despite the obvious need to monitor my bones and bone density, as I was already suffering a decline in bone density from as long ago as 2017. Now, I am probably officially a sufferer from osteoporosis, and, if you ask me, I will tell you that I think it was Anastrozole that did it, because it was 7 months on Anastrozole that caused my left knee to simply quit working. The osteopaths who X-rayed me in Moline told me they could see cartilage on the patella in the X-rays of my osteoarthritic knee joints. They would have had to do an MRI to pin down the exact cause of the excruciating pain (it presented like a meniscus tear), but I was leaving for Texas in 2 days and their very logical question was, "We can order you an MRI, but what are you going to do about it here?" I was X-rayed on 9/19 (Michigan Ave. Convenient Care); on 9/21 (Oak Park, IL joint pain clinic); 9/28 (Moline, IL osteo guys) and on 11/15 in Austin6. I decided to bank on recovery from a meniscus tear. That takes at least 6 months, so I was in and out of a wheelchair and had to hobble with a cane and take Tramadol for pain for those months. It took from September of 2022 to March of 2023. And getting Medicare to pay for it took me hours on the phone from May of 2022 until March of 2023. My Iowa City oncologist has put the blame on the A.I. pills, primarily, coupled with old age and my obviously fragile left knee. I do not know if radiation contributes to bone density loss, but I was radiated 33 times, which seems like a lot. It commenced in May of 2022 and continued until the week before my 77th birthday, which is July 23rd. (This is incorrectly coded on the Trinity Hospital records, but I wrote everything down on a small paper calendar.)

I did not have much joint pain with letrozole. Hot flashes the first month. I could not do bone meds (Reclast) because the doc didn't order it due to concern about afib, now discounted. Three of my friends have had no problems at all. Just posting for balance.

I started with generic anastrazole, then generic letrozole then brand name letrozole. I had immediate reactions to fillers, which is different from a "side effect." I spent money on brand name and then the last month found a generic I could tolerate. Oh well!

The blessing is you have learned and your story will help so many ✨️
Thank you again for sharing love ❤️

Hopeful, I have refrained from publicizing the oncologist's name, although, when asked in private, I do not hesitate to name names. At the outset of my journey, I had NO family history (or friends) with b.c and thought that his dismissive attitude towards the ordering of an oncotype was based on the fact that, on the surface, my presentation seemed relatively positive: small tumor (11 mm) caught early, no spread, good margins, 95% estrogen positive. I did not know that the onco score would be used not just to plan treatment but also would give a % of recurrence rate for later, which became my chief concern as time went by. I have blamed myself for not insisting on the oncotype, but I am a child of the forties and an English teacher does not claim superiority over the wisdom and training of an oncologist in the world I grew up in. I didn't know (then) that the Modern Medical Mantra has become YOYO (You're On Your Own) It was only after all of my treatment (surgery, radiation, one full year of pills) that I began to study up.

I agree that speaking out to a doctor causes you to run the risk of being blacklisted as "a complainer." I grew up totally trusting in the doctor's judgment, so learning that modern medicine requires one to speak up and become a forceful advocate is new to me. I am a writer, so I wrote everything down and I have given each of my current doctors the full story of my treatment(s). (I actually heard the Texas group discussing it out in the hall through the door, that was ajar, and they were appalled.) I will gladly tell any patient, privately, the name of the offending oncologist who apparently did not spend even a minute finding out about my participation in the MOST study for over 20 years and put me on drugs almost guaranteed to cause inflammation of previously injured joints. When I went to Iowa City and met with the man who is now my Midwestern oncologist, that was his comment: that A.I. pills (not Tamoxifen, but Anastrozole, Laetrozole and Exemestane) will cause inflammation of previously injured or arthritic joints. I am not a doctor and it is simply something that I agonized through, firsthand, for 7 months, with little concern showed by the oncologist's office about any of my side effects. I also was not given the truth when I inquired about side effects, and had to find out on my own from blogs like this #ne. I sincerely hope that you do not have the extreme off-the-chart bone and joint pain that I experienced, because I was 76 years old at the time, had given birth to two children (one a 9-lb. boy) and had 3 major surgeries and it was the worst pain I have ever experienced, bar none---and that includes the $12,000 of dental work I am currently undergoing with dental implants, crowns, root canals, etc. Good luck! Don't suffer in silence for months, like I did.

I was on anastrozole for 2 1/2 months. I had SO many side effects. I think the worst 5 were depression, brain fog, hair loss, daily headaches and constipation.
I declined taking exemestane because aromatase inhibitors would only decrease my chances of recurrence by 5 or 6%. I was told that the side effects can be treated with more drugs, but I was concerned about the potential of more drugs causing even more side effects and an even poorer quality of life. I was not convinced that taking numerous drugs at age 70 would increase my overall survival.
These decisions are not made easily. I truly understand that the choices are even harder for breast cancer patients with higher chances of recurrence or at a different stage of life.
I wish you all well and peace with your decisions.