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!

Hi @mjay
You are not alone in experiencing joint pain with Arimidex (anastrozole). Some people do not and others, like you, experience pain as a delayed side effect. I'm tagging @trixie1313 @kathyomaha55 @sparklegram @kathysway @newgranny @wyngnit @dmgweiss and @elizm to share their experiences, keeping in mind that everyone is different. This discussion of over 1300 messages attests to that:
– Concerned about the side effects of anastrozole https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/

Mjay, have you talked to your oncologist about pain management options or possible switching to a different aromatase inhibitor (AI)?

REPLY

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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@colleenyoung

Hi @mjay
You are not alone in experiencing joint pain with Arimidex (anastrozole). Some people do not and others, like you, experience pain as a delayed side effect. I'm tagging @trixie1313 @kathyomaha55 @sparklegram @kathysway @newgranny @wyngnit @dmgweiss and @elizm to share their experiences, keeping in mind that everyone is different. This discussion of over 1300 messages attests to that:
– Concerned about the side effects of anastrozole https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/

Mjay, have you talked to your oncologist about pain management options or possible switching to a different aromatase inhibitor (AI)?

Jump to this post

@mjay As Colleen noted, there are not uniform reactions to anastrozole, but bone and joint aches seem to be fairly common. Mine started about three months after initiating it. At the time, exercise on the treadmill seemed to help. Of course, exercise options are different for many of us during the pandemic… I'm sitting more now for one thing… and alas, I'm older.

Nevertheless, and for other reasons, I switched AIs last October. I haven't noticed the bone aches for several months now. It is something which you might want to consider. Do discuss this option with your oncologist and let us know.

REPLY
@colleenyoung

Hi @mjay
You are not alone in experiencing joint pain with Arimidex (anastrozole). Some people do not and others, like you, experience pain as a delayed side effect. I'm tagging @trixie1313 @kathyomaha55 @sparklegram @kathysway @newgranny @wyngnit @dmgweiss and @elizm to share their experiences, keeping in mind that everyone is different. This discussion of over 1300 messages attests to that:
– Concerned about the side effects of anastrozole https://connect.mayoclinic.org/discussion/i-completed-all-treatments-for-breast-cancer-but-now-i-am-supposed/

Mjay, have you talked to your oncologist about pain management options or possible switching to a different aromatase inhibitor (AI)?

Jump to this post

Thank you for your reply and info. I'm aware of the many side effects of AI's from the myriad comments posted. What took me by surprise is that my joint pain came on after a fair amount of time being on them (1.5 yrs), or perhaps I was just naive to think that all of the side effects would hit me in the first few months of being on the drug and that I was somewhat in the car. With the exacerbated joint pain, I'm now questioning what damage is being done longer term. I will definitely be discussing with my oncologist next month and getting more testing to determine osteoporotic changes. Thank you again for your assistance.

REPLY
@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🙏

Jump to this post

JKH, you are right on about the tendon pain problem. I have had severe tendonitis in my hands from my long-term keyboarding career and so my hands are the most vulnerable to pain and this is where I'm feeing it worse. It was tolerable the first year but now it's getting so it's constant ashiness. It also depends how much I'm putting my hands to task, but the pain is elsewhere as well, legs, knees, etc. I'll be discussing further with my oncologist next month. Thank you for your insight! Best wishes on your journey.

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@elizm

@mjay As Colleen noted, there are not uniform reactions to anastrozole, but bone and joint aches seem to be fairly common. Mine started about three months after initiating it. At the time, exercise on the treadmill seemed to help. Of course, exercise options are different for many of us during the pandemic… I'm sitting more now for one thing… and alas, I'm older.

Nevertheless, and for other reasons, I switched AIs last October. I haven't noticed the bone aches for several months now. It is something which you might want to consider. Do discuss this option with your oncologist and let us know.

Jump to this post

Hi elizm, thank you for your response. I'm happy to hear you've found something that is less troublesome. May I ask what drug it is that you're taking now with less side effects?

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@mjay

Hi elizm, thank you for your response. I'm happy to hear you've found something that is less troublesome. May I ask what drug it is that you're taking now with less side effects?

Jump to this post

Yes, my side effects from Anastrozole came on slowly. I think I took it for a year and a half, switched to Exemestane, had bad reactions to that, so after a month or so, I changed to Tamoxifen. After almost a year and a half, I have very few side effects. It's very subjective. Some are fine with all of the above with no side effects.

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@mjay
Hi Mjay – You are amazing staying on that particular AI for such a long time. I only lasted 1 month…the pain was so horrific. Even my daughter-in-law was concerned about me as just trying to get out of a chair and start moving was so very difficult. However, I have never been very good at drugs or anesthetics! So tried the next AI and had horrendous headaches with that. When I spoke with my oncologist, she said let's try the last one (exemestane). I've been on that one now for about a year and do quite well with it, all things considered. I had been having a rough time waking up about 3, 4, 5 times a night. However, I started taking liquid melatonin and find that I only wake up about once a night…what a difference! I tried the pill form but that did not work for me. What I have also read is if you take too much melatonin, it can cause nightmares and wakefulness. All the best to you.

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@mjay

Hi elizm, thank you for your response. I'm happy to hear you've found something that is less troublesome. May I ask what drug it is that you're taking now with less side effects?

Jump to this post

At first I was switched from Anastrozole to Exemestane, which many people find of benefit as it's a steroid. Regrettably, I had a severe allergic reaction to it. A few months later, after the rash subsided, I was switched to Letrozole. It gave me extremely swollen feet and unrelenting insomnia. The feet situation was particularly troublesome as I have chemo-induced peripheral neuropathy as it is….

Having run out of AI (aromatase inhibitor) choices, my oncologist then switched me to a SERM (a selective Estrogen Receptor Modulator) called Evista (Raloxifene). SERMs most commonly are given to those who are pre-menopausal. (Tamoxifen is a well-known SERM.) SERMs act a bit differently than AI's do, and are a bit less effective than AIs, but are generally effective for those who are post-menopausal.

EVISTA has the advantage of helping build bone. One of the downsides is that it is much more expensive than an AI. (For my particular drug plan, the out-of-pocket cost is $400/year versus $28/yr for the AIs.) I've only recently started on it so I imagine that it will take a few weeks/months before I may notice any side effects… if at all.

Each of the AIs and SERMs have a long list of POSSIBLE side effects. The only way for an individual to find out is to try them and, if she experiences a side effect or more, figure out how tolerable it is and/or whether there are ways to help alleviate it.

Wishing you good luck on this medication adventure!

REPLY
@trixie1313

@mjay
Hi Mjay – You are amazing staying on that particular AI for such a long time. I only lasted 1 month…the pain was so horrific. Even my daughter-in-law was concerned about me as just trying to get out of a chair and start moving was so very difficult. However, I have never been very good at drugs or anesthetics! So tried the next AI and had horrendous headaches with that. When I spoke with my oncologist, she said let's try the last one (exemestane). I've been on that one now for about a year and do quite well with it, all things considered. I had been having a rough time waking up about 3, 4, 5 times a night. However, I started taking liquid melatonin and find that I only wake up about once a night…what a difference! I tried the pill form but that did not work for me. What I have also read is if you take too much melatonin, it can cause nightmares and wakefulness. All the best to you.

Jump to this post

Thanks, trixie1313. I don't know about amazing…maybe I just had more estrogen in my system and it took this long for the AI to finally deplete it so that it is now kicking up more pain. If I have to stick it out on Arimidex, I will, as I think the long term benefits are worth it over not taking anything, but my biggest fear is osteoporosis because there's no turning back once you lose a certain amount of bone and then the pain is there forever. What choices we have to make…ugh! I'm so happy the melatonin is working for you. I take GABA, a natural supplement that helps me sleep better while being on the Arimidex as well so I'm able to get more sleep. I really don't want to be told to take another drug to combat the effects of a certain drug, so I'll just wait and see how things go. Best wishes to you!

REPLY
@elizm

At first I was switched from Anastrozole to Exemestane, which many people find of benefit as it's a steroid. Regrettably, I had a severe allergic reaction to it. A few months later, after the rash subsided, I was switched to Letrozole. It gave me extremely swollen feet and unrelenting insomnia. The feet situation was particularly troublesome as I have chemo-induced peripheral neuropathy as it is….

Having run out of AI (aromatase inhibitor) choices, my oncologist then switched me to a SERM (a selective Estrogen Receptor Modulator) called Evista (Raloxifene). SERMs most commonly are given to those who are pre-menopausal. (Tamoxifen is a well-known SERM.) SERMs act a bit differently than AI's do, and are a bit less effective than AIs, but are generally effective for those who are post-menopausal.

EVISTA has the advantage of helping build bone. One of the downsides is that it is much more expensive than an AI. (For my particular drug plan, the out-of-pocket cost is $400/year versus $28/yr for the AIs.) I've only recently started on it so I imagine that it will take a few weeks/months before I may notice any side effects… if at all.

Each of the AIs and SERMs have a long list of POSSIBLE side effects. The only way for an individual to find out is to try them and, if she experiences a side effect or more, figure out how tolerable it is and/or whether there are ways to help alleviate it.

Wishing you good luck on this medication adventure!

Jump to this post

Thanks for all the info-sharing. This is quite the adventure!

REPLY
@mjay

Thank you for your reply and info. I'm aware of the many side effects of AI's from the myriad comments posted. What took me by surprise is that my joint pain came on after a fair amount of time being on them (1.5 yrs), or perhaps I was just naive to think that all of the side effects would hit me in the first few months of being on the drug and that I was somewhat in the car. With the exacerbated joint pain, I'm now questioning what damage is being done longer term. I will definitely be discussing with my oncologist next month and getting more testing to determine osteoporotic changes. Thank you again for your assistance.

Jump to this post

I switched to exemestane at 1 year & the pain took about 3 months to ease for me and is now negligible. My hands were the worst. It started about 3 months into Anastrozole and increased every month – till it was about a 7 all the time before I switched. So glad I switched. Good luck.

REPLY
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