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Arimidex Pain Starting after 17+ months

Posted by mjay @mjay, Apr 12, 2021

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!

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cerwin | @cerwin | Apr 18, 2021
In reply to @whr "I take 1 mg, I take mine with food in the morning. I am sorry your..." + (show)
@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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whr | @whr | Apr 18, 2021
In reply to @jkh "I tried some stretchy braces for my knees which helped enough to get out and walk...." + (show)
@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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jeaniebean | @jeaniebean | Apr 18, 2021
In reply to @ncgal "I feel I have to reply to this as I was going through the same thing...." + (show)
@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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whr | @whr | Apr 19, 2021
In reply to @jeaniebean "Thank you for posting this! I stopped in January because I could no longer walk or..." + (show)
@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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whr | @whr | May 26, 2021

This is exactly what happened to me, I started the anastrozole in November, 2019 and except for insomnia was doing okay with it. In March my tendons felt like they were shortening up, I couldn't walk without a cane and was in constant pain. My knees, were the worst and feet and ankles, hands were bad but tolerable. I went to PT and then started swelling in my legs. I have been off of it for two months and while the pain is better it isn't gone and I feel like I'm in withdrawal. Hopefully it will all even out, I am 76 and have developed arthritis in the knee and osteoporosis. Since all the meds have similar side effects and I very susceptible to reactions of any meds, I will have to take my chances. I will be having another PET scan soon and we will go from there.

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jeanadair123 | @jeanadair123 | May 27, 2021

I was also on this type of medicine I tried 2 different ones and had the same side effects. I could hardly get up from a chair and walk, I was 68 and felt like I was 90 nevertheless I decided not to try anymore.

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keepmoving2 | @keepmoving2 | May 28, 2021

@mjay Hi - I too started the Arimidex (anastrozole) in late October 2019 along with Verzenio. Absolutely no big deal - could not be more active with great numbers. Managed the GI and nauseous with a good diet of well balanced food. Hair loss/thinning started and I jumped on to the Biotin gummies of Hair, Sin and Nails. But in Feb/March this year weirdly started getting debilitating back pain, that went away then foot pain but that stopped, then knee, then belly. My numbers budged a bit. I felt like a “complainer” to myself and to my doc. I mean as we age who doesn’t get some aches & pain. However I didn’t want to accept this new “stage”. So my doc not pulling me off yet. He is using all my aches & pain as an excuse to do a complete (I mean complete) body work up. We are thinking something percolating in my case. So I don’t want to scare you or anyone else. But the docs always suspected my meds would stop working. But we weren’t sure how it would “announce” it. Also we have talked about how it could be med side effects but my team felt like this was a good as time as any to do a complete workout - eliminate what we can, etc. And importantly getting on top of anything early before it can settle. So everyone who starts to experience “new issues” after handling meds for a good amount of time can hope for medication side effects but doublecheck for the big “C”. No matter what is determined, you will be happy you did.

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mjay | @mjay | May 28, 2021
In reply to @keepmoving2 "@mjay Hi - I too started the Arimidex (anastrozole) in late October 2019 along with Verzenio...." + (show)
@keepmoving2

@mjay Hi - I too started the Arimidex (anastrozole) in late October 2019 along with Verzenio. Absolutely no big deal - could not be more active with great numbers. Managed the GI and nauseous with a good diet of well balanced food. Hair loss/thinning started and I jumped on to the Biotin gummies of Hair, Sin and Nails. But in Feb/March this year weirdly started getting debilitating back pain, that went away then foot pain but that stopped, then knee, then belly. My numbers budged a bit. I felt like a “complainer” to myself and to my doc. I mean as we age who doesn’t get some aches & pain. However I didn’t want to accept this new “stage”. So my doc not pulling me off yet. He is using all my aches & pain as an excuse to do a complete (I mean complete) body work up. We are thinking something percolating in my case. So I don’t want to scare you or anyone else. But the docs always suspected my meds would stop working. But we weren’t sure how it would “announce” it. Also we have talked about how it could be med side effects but my team felt like this was a good as time as any to do a complete workout - eliminate what we can, etc. And importantly getting on top of anything early before it can settle. So everyone who starts to experience “new issues” after handling meds for a good amount of time can hope for medication side effects but doublecheck for the big “C”. No matter what is determined, you will be happy you did.

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Please keep us posted on your outcome. I wish you all the best!

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sparklegram | @sparklegram | May 31, 2021

@mjay this exactly what I experienced with Arimidex. I took it for a year and a half with many painful and Yucky side effects. I had pain and stiffness in my shoulders, legs, ankles, feet, hands, thumbs and back, Insomnia, trigger thumb, fatigue. After trying a six week hiatus, it was still terrible, so twice I changed drugs. My Oncologist prescribed Exemestane. On that medication i experienced severe neck pain, sensitive skin, painful to the touch. I finally went to Tamoxifen. It has had fewer side effects for me. I know everyone has different responses to different meds. This was merely my experience.

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mjay | @mjay | May 31, 2021
In reply to @sparklegram "@mjay this exactly what I experienced with Arimidex. I took it for a year and a..." + (show)
@sparklegram

@mjay this exactly what I experienced with Arimidex. I took it for a year and a half with many painful and Yucky side effects. I had pain and stiffness in my shoulders, legs, ankles, feet, hands, thumbs and back, Insomnia, trigger thumb, fatigue. After trying a six week hiatus, it was still terrible, so twice I changed drugs. My Oncologist prescribed Exemestane. On that medication i experienced severe neck pain, sensitive skin, painful to the touch. I finally went to Tamoxifen. It has had fewer side effects for me. I know everyone has different responses to different meds. This was merely my experience.

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Thanks for your reply. I’m happy the tamoxifen works better for you and helped minimize side effects. I have a lot of the same issues you experienced, plus anxiety and depression and brain fog/memory loss as a result of all the side effects, not to mention fear of recurrence. I can no longer wear my rings as my knuckles are too swollen, likely arthritis taking up residence where I had none previously.
I’m trying to weigh the pros and cons of going off all drugs to maintain quality of life, but it’s such a gamble. I have very dense breasts and they’re always “seeing something” on exam requiring more views so I may be more on edge off the drugs than on them with all the side effects. I have a meeting this week but since oncologists are MD.’s who want to save lives, I don’t envision they’ll be in agreement with going off the drugs, although in the end it’s everyone’s personal choice.
Thanks to all of you for your responses and support on this group as nobody relates to our condition as we all can. 💗

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