Can joint pain of aromatase inhibiters (AIs) be reversed completely?

Posted by shenriq @shenriq, Jan 6, 2018

Over the past year, I have taken2 of the 3 Anastrozole for six months and had to come off because of extreme joint pain. The following 6 months, I took Aromasin, which has given me slightly less joint pain, with similar symptoms - terrible pain from my fingertips through my wrists and above. There is one remaining AI that remains, which I intend to inquire about this coming week, with my oncologist, which I've heard has the lesser joint pain than the first 2.
I cannot take Tamoxofin, because of thrombocytosis, so I opt for the 3rd drug and hope that the side effects are less, or choose to live with the pain that is ongoing, that impacts my ability to open bottles, using scissors and the unfortunate difficulty that comes with a trigger finger - which is very sore (I'm wearing a finger brace). When I wake up in the morning, many of my fingers are numb and tingly, which dissipates after a while, but the range of joint pain in both hands is depressing. Not sure that I can do this for another 4 years, as I want to benefit from its impact on reducing estrogen levels and the reoccurrence of (breast) cancer.
Should I expect that when I come off these meds, that my hands will return to "normal" ? I need input from those of you who have taken this journey.

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Hello @shenriq,

You pose a good, albeit complex, question. If you don't mind sharing a bit more about your situation to help the community and myself understand, that could be helpful.

If you are comfortable sharing, aromatase inhibitors are medications taken for breast cancer in regards to estrogen levels? And am I correct in my interpretation that these medications cause joint pain as a side-effect? If you don't mind sharing a bit more, how are you doing on your journey with breast cancer? Are the medications helping with that diagnosis? And you mention that you have to take these medications for 4 years, is that all part of the breast cancer treatment? I hope these question don't seem too elementary, I am just trying to educate myself as well as the community so we can offer the best response as a community.

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@JustinMcClanahan

Hello @shenriq,

You pose a good, albeit complex, question. If you don't mind sharing a bit more about your situation to help the community and myself understand, that could be helpful.

If you are comfortable sharing, aromatase inhibitors are medications taken for breast cancer in regards to estrogen levels? And am I correct in my interpretation that these medications cause joint pain as a side-effect? If you don't mind sharing a bit more, how are you doing on your journey with breast cancer? Are the medications helping with that diagnosis? And you mention that you have to take these medications for 4 years, is that all part of the breast cancer treatment? I hope these question don't seem too elementary, I am just trying to educate myself as well as the community so we can offer the best response as a community.

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Breast tissue was removed about 20 months ago, followed by the recommendation that take AI, aromatase inhibiters, prophylactically, for 5 years. The first of 5 hears included 6 months each of Anastrozole, followed by 6 months of Aromasin. The most intolerable side effects of each was joint pain in my hands and wrists. After the first 6 months, I felt that the joint pain was debelitating and opted to move to the next AU, which also resulted in similarly difficult joint pain. Looking back, I couldn't begin to say whether the first drug was worse than the 2nd. It was suggested that I stop the drug completely. Because I want the benefit of the AI, to thwart the reoccurrence of irregular or cancerous cells, and asked to be put on the 3rd AI. Not sure how I'm going to tolerate the 3rd drug, I choose to try it, hoping that the effects aren't so difficult, because I have no further options, as I cannot take Tamoxofin, because I have thrombocytosis, a blood disorder that causes elevated platelets, that is problematic because of the potential for blood clots..
During my 2 week time off the AIs, I was told that my joint pain should completely go away and I'm hoping that's the case, as I have been off for 1 week and am not yet feeling substantive relief -- but I have another week off and am keeping my fingers crossed.
The joint pain I experience has lead to difficulty opening up bottles, snapping my fingers, shaking hands, and I have a painful "trigger" finger. Most of all, I am looking forward to starting Letrezole, hoping that my joint pain till be less, enabling me to make the commitment to continue for 4 more years.
I hope this helps you have a better perspective on my joint pain challenges and the need to continue the meds. Thanks for your inquiry..

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I had severe joint pain on Aromasin and my oncologist found out I was vitamin B deficient. Im taking weekly B12 shots and they are helping although my hands arent 100%.

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I have been on Letrezole for 2 months after total mastectomy of one breast, 6 months of chemo and 3 weeks of daily radiation. The Leterzole has caused pain in my joints, lower back pain, sometimes extreme during the night but fine during the day when I’m moving and two trigger thumbs, one I have had a cortisone injection for.
I will persevere for 6 months to see if it settles down but it’s not pleasant.
I wish you all the best.

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@harmer

I have been on Letrezole for 2 months after total mastectomy of one breast, 6 months of chemo and 3 weeks of daily radiation. The Leterzole has caused pain in my joints, lower back pain, sometimes extreme during the night but fine during the day when I’m moving and two trigger thumbs, one I have had a cortisone injection for.
I will persevere for 6 months to see if it settles down but it’s not pleasant.
I wish you all the best.

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My oncologist prescribed Gabapentin (used for nerve pain) that I take at nighttime for the joint pain I experienced while sleeping.

It worked wonders. ♥️

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@shenriq

Breast tissue was removed about 20 months ago, followed by the recommendation that take AI, aromatase inhibiters, prophylactically, for 5 years. The first of 5 hears included 6 months each of Anastrozole, followed by 6 months of Aromasin. The most intolerable side effects of each was joint pain in my hands and wrists. After the first 6 months, I felt that the joint pain was debelitating and opted to move to the next AU, which also resulted in similarly difficult joint pain. Looking back, I couldn't begin to say whether the first drug was worse than the 2nd. It was suggested that I stop the drug completely. Because I want the benefit of the AI, to thwart the reoccurrence of irregular or cancerous cells, and asked to be put on the 3rd AI. Not sure how I'm going to tolerate the 3rd drug, I choose to try it, hoping that the effects aren't so difficult, because I have no further options, as I cannot take Tamoxofin, because I have thrombocytosis, a blood disorder that causes elevated platelets, that is problematic because of the potential for blood clots..
During my 2 week time off the AIs, I was told that my joint pain should completely go away and I'm hoping that's the case, as I have been off for 1 week and am not yet feeling substantive relief -- but I have another week off and am keeping my fingers crossed.
The joint pain I experience has lead to difficulty opening up bottles, snapping my fingers, shaking hands, and I have a painful "trigger" finger. Most of all, I am looking forward to starting Letrezole, hoping that my joint pain till be less, enabling me to make the commitment to continue for 4 more years.
I hope this helps you have a better perspective on my joint pain challenges and the need to continue the meds. Thanks for your inquiry..

Jump to this post

I have been taking anastrozole since May of 2022. The joint and muscle pain has been awful. Gabapentin has helped but still some days have been horrible. My oncology nurse suggested osteo bi flex and I really didn’t believe it would help. I’ve been taking it for approx two months and I realized the other day that the pain isn’t constant any longer. It’s still there and sometimes pretty bad but, not as much as before. Also, I use cbd/thc edibles before bed in order to control night sweats. . The osteo takes a bit of time but, I’m glad I gave it a try!

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@lisakinpa

My oncologist prescribed Gabapentin (used for nerve pain) that I take at nighttime for the joint pain I experienced while sleeping.

It worked wonders. ♥️

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Thank you, I am Taking Gabapentin for nerve pain but this is not helping with the muscle and joint pain.
I am currently trying Physio exercises to strengthen the worst areas of pain.

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@jaynep

I have been taking anastrozole since May of 2022. The joint and muscle pain has been awful. Gabapentin has helped but still some days have been horrible. My oncology nurse suggested osteo bi flex and I really didn’t believe it would help. I’ve been taking it for approx two months and I realized the other day that the pain isn’t constant any longer. It’s still there and sometimes pretty bad but, not as much as before. Also, I use cbd/thc edibles before bed in order to control night sweats. . The osteo takes a bit of time but, I’m glad I gave it a try!

Jump to this post

Thank you I will try the osteo.

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I have been taking AI Anastrozole since May 22. I had manageable side effects of flashes and joint pain ( hips sacrum hands and lower back pain. I mitigated largely by movement ( initial yoga stretching upon awakening, walking, hiking and yoga). A big challenge for me was waking in the middle of the night and unable to fall back asleep for 1-3 hours.

My side effects worsened dramatically at one year and after careful detection I realized my pharmacy changed generic manufacturer from Accord to Breckinridge … I was able to order the Accord specifically through another pharmacy and after a week break restarted with that. My side effects lessened to the original level.

As I learned how different generic manufacturers can affect my experience I started a trial of BRAND Arimidix… and my side effects have gotten MUCH milder. Amazingly I am sleeping through the night which is a dramatic improvement.

Lesson learned: try different manufacturers! It could be the one least good for me is the best for you! But the bottom line is that blocking the estrogen in our body, depriving fuel to cancer cells, will have some side effects … but if we can minimize and manage it makes a huge difference in the quality of our day. 🌸

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@JustinMcClanahan

Hello @shenriq,

You pose a good, albeit complex, question. If you don't mind sharing a bit more about your situation to help the community and myself understand, that could be helpful.

If you are comfortable sharing, aromatase inhibitors are medications taken for breast cancer in regards to estrogen levels? And am I correct in my interpretation that these medications cause joint pain as a side-effect? If you don't mind sharing a bit more, how are you doing on your journey with breast cancer? Are the medications helping with that diagnosis? And you mention that you have to take these medications for 4 years, is that all part of the breast cancer treatment? I hope these question don't seem too elementary, I am just trying to educate myself as well as the community so we can offer the best response as a community.

Jump to this post

"Aromatase inhibitor," Wikipedia.

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