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For Arimidex (Anastrozole) users, new, past, and ongoing

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  • moderators
    moderators Posts: 9,291

    Hi @alissat,
    It's a good question, and you may be correct @saleen19 that it is a build up. We'd recommend you letting your medical oncology team know and talk about it with them! And please keep us posted!

  • life1963
    life1963 Posts: 369

    Hi everyone,

    I have been on anastrozole for seven years. I was dealing with joint pain and some sleeping problems. This past year I have started having pins/needles and numbness in both arms. Right leg. Also sciatic in right leg. My MRI shows compressed C4 and C5. Also a bulging disc L4, L5 and L5(s). Nerve conduct test shows mild to moderate carpal tunnel. Also I have been experiencing brain fog.

    I was wondering if any of you have started feeling this way since taking the pill. I have 3 more years to go but if is is the pill, it is kicking my butt this past year!

    Any advice is welcomed! :)

  • cindyny
    cindyny Posts: 1,450

    Life1963, I took anastrazole for just under 5 years. I had brain fog really bad in the beginning. As well as sleeping problems and joint pain. I’m 4 years older than you, 1959, and some of the SE - we were not sure after 5 years if the problems were SE or just aging in general. I also had to take fosamax generic because anastrazole goes after your bones. That drug too had SE.

    Discuss with your MO if you can switch AI drugs, or take a break.

    Some ladies had opted to stop the AI, claiming they needed quality of life over extending minimally their life. It’s all a personal choice. Best of luck with your choices.

  • I am one of those who chose quality of life over hormone blockers. I am 71 and had surgery for stage 1 grade 1 breast cancer, no lymph node involvement. I did a lot of homework before making my decision. I studied the drug’s effects on the body and read hundreds of patient experiences. It seems the AIs speed up the aging process and it’s already going fast enough for me. I already have joint pain, trouble sleeping and am losing bone. I don’t need any of these to intensify. Many people report feeling like 90 on these drugs. I’m living my healthiest life possible and realize I’m taking my chances, but it’s a quality of life issue for me. Maybe 7 years on the drug is enough for you. Something to discuss with your doctor. We are all different and what is good for one may not be good for another. Btw, I took Fosemax years ago and was only on it for 15 months. I had horrific joint, muscle and connective tissue pain. I quit bone drugs too. I do my best to exercise to keep my muscles strong and flexible. It’s the best I can do.

  • I'm 79 now. I took anastrozole for 5 years along with Fosamax. I had few side effects other than some morning stiffness which was easily handled by taking regular Claritin. I had no problems with Fosamax either. I started both when I was 70. My oncologist said that I didn't need to go beyond 5 years on anastrozole. So I didn't.

    Some of us are able to tolerate Arimidex and some of us are not. Just remember you don't know how you will react until you try it.

  • jinnynh
    jinnynh Posts: 27

    I was on Fosamax & Bonvive for many years until a bone in my foot just snapped as a result of a very slight blow to my foot (on soft ground). That was the end of that treatment for me (plus hormone substitution). Nowadays, I follow the Saveourbones guidelines about diet and exercise. My bones seem fine, no more problems despite a few falls (from stumbling). I took Amiridex for about a year and got carpal tunnel syndrome and trigger thumb. Operated on both two years ago. My fingers suffer some numbness, but a second operation is not worthwhile. As both symptoms can come from Arimidex, I also stopped that with my oncologist's "permission" because my cancer risk is low. She agreed my quality of life was worse. I pass all my check-ups, so I hope I will continue to be lucky.

  • saleen19
    saleen19 Posts: 29

    It is now being found out that bone drugs can cause metatarsal fractures along with atypical femur fractures. My sister in law (who was on Reclast) was walking in a mall and a bone in her foot just snapped. She had to have surgery with plates and screws. None of these drugs are harmless. Not bone drugs, not hormone blockers. I think it’s a very individual thing whether you should take them or not. There is no “one size fits all”. Thanks for sharing your experience. It only confirms my decision to not take either of those drugs.

  • castigame
    castigame Posts: 337

    Just being a cry baby. Been taking Arimidex straight 7.5 yrs without fosamax type meds. Got a bone density done about a month ago and result was good. Right after the DEXA, started having severe hip pain. I was in agony. Skipping Arimidex was a game changer. Still wants to believe it is all in my head because I really want to continue 2.5 more years. The mind game to continue or not is close to the level of PTSD. But now it looks minimum break from the med is winning. Scared.

  • saleen19
    saleen19 Posts: 29

    I hear you. 7.5 is a long time to be on Arimidex, and I don't know your situation, but I believe most women are on it for 5 years. For myself, I have refused hormone blockers completely. I am 71 with a low risk of recurrence. Not "no risk", mind you. I live with the fact that the cancer may return. But I also live with the fact that blocking estrogen has many adverse effects on the body. We are all individuals and need to make our own decisions. Nobody knows your body better than you do. For me, it's a quality of life issue. Every time I weigh the pros and cons, I keep coming back to my decision to skip hormone blockers. Not that I'm not doing anything - I eat a very healthy diet, do some form of exercise daily and try to live as healthy a life as possible. I have also cut out sugar almost completely, no easy feat for this sweet tooth.

    Best of luck to you in your decision. BTW, congratulations on having good results with your DEXA scan. That is impressive, especially after 7.5 years of Arimidex.

  • pontiacpeggy
    pontiacpeggy Posts: 6,341

    I'm now nearly 80. I started on Arimidex at 70 and stayed on it for 5 years. I took Fosamax along with it. I was very lucky. No side effects other than occasional stiffness in the morning and I took regular Claridin for it. I also moved across the country mid-way through my treatment. My new oncologist said 5 years was plenty. I'm nearly 11 years NED.

    Each of us has to decide what treatments we will or will not accept. Lumpectomy, radiation and Arimidex was right for me. Quality of life matters.

  • maggie15
    maggie15 Posts: 1,889

    Hi @castigame, If you are unable to go back on Arimidex remind yourself that chronic pain contributes to inflammation which is a potential factor in recurrence. I agree with the others that you have taken AIs longer than many and that QOL is important. All the best.

  • Just took my last anastrozole tablet on memorial day. 1.5 years of tamoxifen, 6 years on anastrozole. Broken ankle 4 years ago, followed by broken wrist two years ago . I'm apprehensive about stopping AI, doc is going to continue to see me and will do blood work. Anything else I should be doing? Getting another bone density test and have cut way down on alcohol.

  • saleen19
    saleen19 Posts: 29
    edited June 8

    Congratulations on finishing anastrozole! Yes, there is much you can do to support your health that is not drug related. I am working with a functional medicine doctor along with an oncologist. I have opted out of AIs because I have a low risk of recurrence and don’t want the side affects of AIs. A healthy diet is very important. My diet consists of a lot of fruits, vegetables and lean protein. I eat organic whenever possible. No trans fats. I’ve eliminated almost all sugar. No alcohol (don’t like it anyway). I exercise regularly doing some strength training, cardio and stretching each day. Since I virtually quit sugar I’m sleeping better than I have in years. Once you get used to a healthy diet, junk food no longer tastes good. Exercise doesn’t have to be vigorous. I use resistance bands or my own body weight for strengthening, walk uphill for cardio and stretch to my ability. Strong and flexible muscles support bone and reduce the risk of fractures. I don’t do any of these perfectly but do the best I can. Best of luck to you. I wish you well on your own healing journey.

  • flax
    flax Posts: 2
    edited June 11

    Just got Dexa scan result and I'm shocked my spine T-Score is -2.9, which got worse from -2.6, 2 years ago. However, my Hip T-scores has improved a lot (it's normal range now), so it's weird. I finished Anastrozole 17 months ago. I was on it about 3 years after tamoxifen for 2 years. I have been doing Yoga, dumbell weight training, and walking every day. Also, taking calcium, magnesium, vitamin D. I figured my exercise was not enough for spine. Also, I found that reversal from bone loss due to anastrozole will take 2 years or more. So that's only hope I am hanging onto now because I don't want to take medication. So I am already working on my new exercise plan and vitamin. I recently discovered AI like ChatGPT or Gemini helps a lot to create a plan.

  • saleen19
    saleen19 Posts: 29
    edited June 11

    That's great about your hip score! It's not easy to get improvement without drugs. Also, very impressive that you are using exercise and nutrition instead of drugs for bone density.

    I took Fosemax about 12 years ago for 15 months and had profoundly severe side effects. I will never take another bone drug again. Like you, I do resistance work, yoga and walking. I eat a healthy diet and take supplements that support my bones (and everything else in my body). I do the best I can at 71.

    Here's the thing a DEXA won't tell you - your bone quality. Dr. Lani Simpson, bone specialist, said you can have dense bones but poor quality, or you can have not-so-dense bones but good quality. Good quality bones have some "give". If there is no give, very dense bones can fracture which is why bisphosphonates are only recommended for five years. The other thing she said is that the goal is to prevent fractures - not necessarily have dense bones. And a good way to prevent fractures is to have strong, flexible muscles, good quality bone plus being mindful how you walk and where you step.

    For myself, I quit having DEXAS. I already know I don't have the bone density of a 30 year old woman. And I refuse to take bone drugs so I don't see the point. I am going to keep doing all of the natural things I am doing and trust in the process. I don't know what the future holds - I am just doing the best I can.

    I wish you all the best - what you are doing is awesome!

  • flax
    flax Posts: 2
    edited June 11

    Thank you for sharing your story and information. I never thought about not having Dexa scan but I will definitely consider it as a choice. Coming think of it, anxiety involving the scan may not worth it if I don't want to take medication. I need to book follow up appointment with Primary Care Dr. now and I want to find DO (not MD) doctor who may suggest more holistic approach. I am with OneMedical and my former doctor is not available. It's downside of the OneMedical. The upside is I can change doctors more easily.

  • saleen19
    saleen19 Posts: 29

    I stopped having Dexas for exactly that reason - the anxiety. I already know I have osteoporosis and knowing my "score" will just lead to worry. I'm not going to take the drugs, so I don't see any point. I have a functional medicine doctor along with a PCP. The functional medicine doctor is where I get my information on diet, supplements and exercise. It's hard to find a conventional doctor who will help with a holistic approach, although I'm sure they're out there. Best of luck to you.