Arimidex Pain Starting after 17+ months

Posted by mjay @mjay, Apr 12 9:17pm

I've been on Arimidex AI since October 2019 and have experienced some sleeplessness, anxiety/depression, but more recently I've been experiencing stronger joint pain. I thought I was in the clear as far as painful side effects after 1.5 years, but it looks like it may be just coming to a peak now. Has anyone else thought Arimidex side effects were tolerable for the first 1.5 years and then gotten much worse joint pains after a longer period of time in hands, knees, ankles? I'm not sure whether to blame the drug or just getting older. Thanks for your replies!

I found that I have gone thru stages with the anastrozole, which I have been on for 3.5 years. I had severe joint pain, especially in my hands at the 2 year mark. It has gotten better, but I am now finding my biggest issue is recurring UTIs. I also had a lot of hot flashes and was hot all the time, and that has also improved. My oncologist told me they are wanting women to take it for 10 years now. I am willing to do the 5 years and NO MORE!!

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@jkh

I have a a very similar experience. Mild, if any pain the first year then periodic flair ups for the next 6 months. Feet pain, knees, hips, shoulders and hands. All joints at different times and once and a while the “perfect storm” where everything hurt. I am a Yoga teacher and though my practice changed a lot through all of this it helps. I call this a tendon problem as it seems to be my tendons tighten up and create the pain in my joints. In January I asked to be switched to Exemestane. The pain left almost immediately. So happy! However…I am noticing some increasing pain again in my hands. Do what you can each day to bring joy and peace to yourself🙏

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I have had a delayed reaction also, I started Anastrozole in October of 2019 and my knee pain is especially unmanageable. They tell you to get out and exercise but it isn't possible with the pain and stiffness. I am on a three week break from the medication to see if it helps. I agree that it feels like tendon pain, the tendons feel like they are tightening and shrinking. This hasn't been much fun, insomnia depression, I try to be positive, but it's been difficult during these times.

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@whr

I have had a delayed reaction also, I started Anastrozole in October of 2019 and my knee pain is especially unmanageable. They tell you to get out and exercise but it isn't possible with the pain and stiffness. I am on a three week break from the medication to see if it helps. I agree that it feels like tendon pain, the tendons feel like they are tightening and shrinking. This hasn't been much fun, insomnia depression, I try to be positive, but it's been difficult during these times.

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I tried some stretchy braces for my knees which helped enough to get out and walk. To walk in nature as often as I can has helped with the depression. When I was feeling particularly low (pain and lack of sleep will do that) I would place my hand on my heart when I woke up and tell myself that I was a beautiful person and it is a great day to be alive. Even a fake smile helps to bring some joy to your heart. Hand in there my fellow warrior. We’ve got this!

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@whr

I have had a delayed reaction also, I started Anastrozole in October of 2019 and my knee pain is especially unmanageable. They tell you to get out and exercise but it isn't possible with the pain and stiffness. I am on a three week break from the medication to see if it helps. I agree that it feels like tendon pain, the tendons feel like they are tightening and shrinking. This hasn't been much fun, insomnia depression, I try to be positive, but it's been difficult during these times.

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Thank you for your posting – what dosage are you taking? I’m starting on 1mg tonite and have anxiety about side effects on my already challenging health conditions. I have gastroparesis, severe fibromyalgia chronic pain and obstructive sleep apnea. Even on meds, I can’t get much sleep.:-(

I’m in a research study on anastrozole at Mayo Clinic in Jacksonville, where I’m a breast cancer Pt.

Did you have existing problems in the areas this drugs has as common side effect areas? Where are you being treated?

Thx for any info you can provide.

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I take 1 mg, I take mine with food in the morning. I am sorry your are going into this with so many health issues and certainly hope this doesn't make your conditions any worse. I really didn't notice a lot of change in the first six months, no hot flashes, nausea or joint pain, but lately it is almost unmanageable. Insomnia was the first thing that showed up, depression (though the pandemic may have done that) and now joint and muscle pain. I have stopped taking it for three weeks to see if my condition improves, it hasn't been a week yet. It's a catch 22, I had lymph node involvement with my cancer so am more concerned about not taking it. I am 76 and will have to look at quality of life rather than longevity if this continues. I had my surgery in December 2019, no radiation or chemo which they said was "preventative" since my PET scan was clear. I go in every three months for blood work, so far nothing is amiss but my severe joint and muscle pain. I have also tried a collagen protein powder with out any improvement in my pain. I live in Duluth, MN. I would say hope for the best, keep a positive attitude and then deal with whatever comes up. Best wishes.

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@jkh

I tried some stretchy braces for my knees which helped enough to get out and walk. To walk in nature as often as I can has helped with the depression. When I was feeling particularly low (pain and lack of sleep will do that) I would place my hand on my heart when I woke up and tell myself that I was a beautiful person and it is a great day to be alive. Even a fake smile helps to bring some joy to your heart. Hand in there my fellow warrior. We’ve got this!

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Thank you for your positive comments and suggestions. I really try to have joy in my heart but constant pain wears me down. I am going to try some therapy, and a stretchy knee brace might be a good idea to stabilize the knee when I walk.

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@whr

Thank you for your positive comments and suggestions. I really try to have joy in my heart but constant pain wears me down. I am going to try some therapy, and a stretchy knee brace might be a good idea to stabilize the knee when I walk.

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I feel I have to reply to this as I was going through the same thing. II had chemo, radiation and a lumpectomy all from December of 2018 and rang the bell in December of 2019. I started the Anestrozole (1mg) at the beginning of December 2019. In February of 2020 I had a colonoscopy and was given a 7 day course of Cipro. Within four days of taking Cipro I developed severe pain in my muscles and joints. I was told that if it was the Cipro the pain would stop once I finished it. It did not. I spoke to the oncologist and he took me off the Anestrozole for two weeks. However, the pain persisted. To make a long story short, after seeing my regular GP, the radiologist and then a neurologist, it was discovered through blood work that I had PMR (polymyalgia Rheumatica). He sent me to a rheumatologist who put me on Prednisone and Voila! Pain gone. However it took months to discover this. No one knows how the symptoms start nor does there seem to be a "cure" for it. I have had no problems with the Anestrozole and have been taking it for over a year now. I am 78. Just to let you know that there might be other reasons for the pains rather than the Anestrozole. Good luck.

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Thank you for the clarification, Cipro is a drug with lots of side effects. I should know in another two weeks one way or the other.

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@whr

I take 1 mg, I take mine with food in the morning. I am sorry your are going into this with so many health issues and certainly hope this doesn't make your conditions any worse. I really didn't notice a lot of change in the first six months, no hot flashes, nausea or joint pain, but lately it is almost unmanageable. Insomnia was the first thing that showed up, depression (though the pandemic may have done that) and now joint and muscle pain. I have stopped taking it for three weeks to see if my condition improves, it hasn't been a week yet. It's a catch 22, I had lymph node involvement with my cancer so am more concerned about not taking it. I am 76 and will have to look at quality of life rather than longevity if this continues. I had my surgery in December 2019, no radiation or chemo which they said was "preventative" since my PET scan was clear. I go in every three months for blood work, so far nothing is amiss but my severe joint and muscle pain. I have also tried a collagen protein powder with out any improvement in my pain. I live in Duluth, MN. I would say hope for the best, keep a positive attitude and then deal with whatever comes up. Best wishes.

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Thank you for your comments. I’m 64 and I’m “expecting the worst and praying for the best” regarding side effects of anastrozole. All of my doctors are aware of my current health issues and my Oncologist says it will be a challenge dealing with side effects.

I trust him and at least we are going into this preparing how to deal with them.

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@jkh

I tried some stretchy braces for my knees which helped enough to get out and walk. To walk in nature as often as I can has helped with the depression. When I was feeling particularly low (pain and lack of sleep will do that) I would place my hand on my heart when I woke up and tell myself that I was a beautiful person and it is a great day to be alive. Even a fake smile helps to bring some joy to your heart. Hand in there my fellow warrior. We’ve got this!

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I haven't been able to find a stretchy brace, just the sleeve that is for compression and is so tight I can wear it.

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@ncgal

I feel I have to reply to this as I was going through the same thing. II had chemo, radiation and a lumpectomy all from December of 2018 and rang the bell in December of 2019. I started the Anestrozole (1mg) at the beginning of December 2019. In February of 2020 I had a colonoscopy and was given a 7 day course of Cipro. Within four days of taking Cipro I developed severe pain in my muscles and joints. I was told that if it was the Cipro the pain would stop once I finished it. It did not. I spoke to the oncologist and he took me off the Anestrozole for two weeks. However, the pain persisted. To make a long story short, after seeing my regular GP, the radiologist and then a neurologist, it was discovered through blood work that I had PMR (polymyalgia Rheumatica). He sent me to a rheumatologist who put me on Prednisone and Voila! Pain gone. However it took months to discover this. No one knows how the symptoms start nor does there seem to be a "cure" for it. I have had no problems with the Anestrozole and have been taking it for over a year now. I am 78. Just to let you know that there might be other reasons for the pains rather than the Anestrozole. Good luck.

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Thank you for posting this! I stopped in January because I could no longer walk or use my hands. I can now walk but still have limited use of my hands. I am going to talk to my doctor about this test.

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@jeaniebean

Thank you for posting this! I stopped in January because I could no longer walk or use my hands. I can now walk but still have limited use of my hands. I am going to talk to my doctor about this test.

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After reading the description for ncgal's pain, that disease didn't "match" for me. The problem with stopping the anastrozole, besides increased cancer risk, is that all of the symptoms don't resolve for months or ever. I just don't want to keep adding medications to try to fight side effects.

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