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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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rozv | @rozv | Dec 26, 2023
In reply to @shenriq "Breast tissue was removed about 20 months ago, followed by the recommendation that take AI, aromatase..." + (show)
@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..

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I am following your post because I too have developed debilitating joint pain but in my knees and feet and lower back. The pain was so severe I couldn't fall asleep without using heating pads and elevating my knees to reduce the pressure against the mattress. I was sleeping 2-3 hours a night then napping sitting in an easy chair during the day. I discontinued taking anestrozole 2 weeks prior to my 6 mo's oncology visit and the pain did resolve. The oncologist told me to take a 6 months break from the anestrozole but didn't prescribe another AI. I am very scared with no AI so tried taking it again last week and the severe pain returned. The oncologist told me chance of recurrence is 8,%with the AI, 20% w no meds.. so I am scared and don't trust being off all meds. This is my 2nd DCIS... I went thru treatment w Tamoxiphen 15yrs ago but developed cognitive issues w the Tamoxiphen so had to stop after 2 yrs. This is a new DCIS breast cancer in the opposite breast.. not a recurreance. I was told the incidence of that happening is 2%... So don't know if I should get a second opinion or ask why I'm not on another AI with the 20% chance of recurrence or should schedule a double mastectomy as I had originally wanted.
I hope your pain resolved once you stop the Anestrozole as mine did. Wishing you a good outcome

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debbiew | @debbiew | Dec 29, 2023

Examsetane caused awful pain for me.

I'm 9 years out from diagnosis from stage 3 triple positive best cancer.

Ask about a medication vacation. Quality of life is important.

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whr | @whr | Dec 30, 2023

I took Anastrozole for 18 months until I couldn't stand the joint pain and swelling. After being off of it for two years the carpal tunnel and joint pain in my hands especially has not gone away. It was four years since my surgery this month, so far so good, I am 78.

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2 replies
dyevooshka | @dyevooshka | Dec 30, 2023
In reply to @whr "I took Anastrozole for 18 months until I couldn't stand the joint pain and swelling. After..." + (show)
@whr

I took Anastrozole for 18 months until I couldn't stand the joint pain and swelling. After being off of it for two years the carpal tunnel and joint pain in my hands especially has not gone away. It was four years since my surgery this month, so far so good, I am 78.

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This is helpful to read, since I have started having pain issues with Anastrozole after 7 months. Numbness in my left hand when I wake up, hold my phone and even doing aqua zumba(seems odd). Hip pain when I sleep on my side and for a while after waking up. Hip and leg pain after 30-minute car rides that takes 5-10 minutes to loosen up and walk normally. I plan on checking the % rate of recurrence without this drug. I like to follow Dr's recommendations...but..want to feel normal again.

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1 reply
bjohnson511 | @bjohnson511 | Dec 30, 2023
In reply to @whr "I took Anastrozole for 18 months until I couldn't stand the joint pain and swelling. After..." + (show)
@whr

I took Anastrozole for 18 months until I couldn't stand the joint pain and swelling. After being off of it for two years the carpal tunnel and joint pain in my hands especially has not gone away. It was four years since my surgery this month, so far so good, I am 78.

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I’m on Anastrozole as well and having the same issues. Plus I can’t sleep! I started on Thanksgiving Day see the Dr next week. If it is this bad going forward. I’m stopping as well! Thanks!

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1 reply
journey99 | @journey99 | Dec 30, 2023

This discussion is helpful. I have been on Letrozole for 2.5 months and my hands and feet are swollen in the morning. Painful to get out of a chair. Once I get moving it is better. Doctor told me to take a 2 week break which will end this week. Still feel the pain and swelling in the morning but better than it was. Doctor appointment on Tuesday to discuss next step. They don't want to start me on Verzenio until we get a tolerable medication.

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timely | @timely | Dec 31, 2023

I have taken Letrozole since March 2023. M
I take glucosamine Chrondroitrin, and Hyaluronic acid plant collagen and 10 mg of melatonin to sleep which works for that. Some people take Claritin for the pain.

The glucosamine Chrondroitrin and hyaluronic acid were working for quite awhile. I have days of hip pain or knee pain or even elbow pain. Once I am up, the pain disappears.
Today no pain so it varies.

I have arthritis also in both knees. I find that if I am seated for a long time. I can get up easily by placing one hand above each knee on the thighs and pushing up…
Seems to increase the knee muscles doing that too.

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nanna1948 | @nanna1948 | Jan 28 6:12am
In reply to @dyevooshka "This is helpful to read, since I have started having pain issues with Anastrozole after 7..." + (show)
@dyevooshka

This is helpful to read, since I have started having pain issues with Anastrozole after 7 months. Numbness in my left hand when I wake up, hold my phone and even doing aqua zumba(seems odd). Hip pain when I sleep on my side and for a while after waking up. Hip and leg pain after 30-minute car rides that takes 5-10 minutes to loosen up and walk normally. I plan on checking the % rate of recurrence without this drug. I like to follow Dr's recommendations...but..want to feel normal again.

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Stick with it I read it is the drug of choice. I was on anastrazole had thumb pain. Rub voltaren. And it helped. Probably arthritis not even the pill I am off for 8 months no diahrea hair is in better condition. Took it for five years My doctor had me walking every day for half hour to prevent muscle aches. It helped with that.

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ksue3 | @ksue3 | Nov 28 4:58pm

I have only been on Anastrozole for 31/2 months. I reported the trigger thumbs, very painful, especially in the morning when awakening. Oncologist said to take a 2 week drug rest and report in. Well, the GI symptoms that I attributed to having had 4 rounds of chemo followed by a heavy case of Covid, are nearly completely gone. Those GI symptoms kept me pretty confined to my home, afraid to go anywhere. If I had a meeting or appt., I just wouldn't eat. I lost about 9 pounds. My 2 weeks is up tomorrow so will call and see what is next. I had ductal in citu and also an area of invasive, had a mastectomy and the 4 rounds of chemo. I am 84. I need quality in my life but sure don't want a recurrence or cancer in the other breast. I read a lot of the posts here and we are all in the same old boat. Afraid to quit the AI drugs and afraid to stay on them.

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2 replies
Mentor
Chris, Volunteer Mentor | @auntieoakley | Nov 28 5:35pm
In reply to @ksue3 "I have only been on Anastrozole for 31/2 months. I reported the trigger thumbs, very painful,..." + (show)
@ksue3

I have only been on Anastrozole for 31/2 months. I reported the trigger thumbs, very painful, especially in the morning when awakening. Oncologist said to take a 2 week drug rest and report in. Well, the GI symptoms that I attributed to having had 4 rounds of chemo followed by a heavy case of Covid, are nearly completely gone. Those GI symptoms kept me pretty confined to my home, afraid to go anywhere. If I had a meeting or appt., I just wouldn't eat. I lost about 9 pounds. My 2 weeks is up tomorrow so will call and see what is next. I had ductal in citu and also an area of invasive, had a mastectomy and the 4 rounds of chemo. I am 84. I need quality in my life but sure don't want a recurrence or cancer in the other breast. I read a lot of the posts here and we are all in the same old boat. Afraid to quit the AI drugs and afraid to stay on them.

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A common theme with these drugs is joint issues, my trigger finger has never gone away but I am unwilling to have to have the little outpatient surgery. I ride horses, knit and spin, I would rather have to ice and deal with some pain than to risk all of that.
I did keep walking at least half an hour almost every day to keep down most of the other joint issues. I did not have GI issues but most folks say that taking it at night seems to alleviate it.
I agree we are all kind of in the same boat. I am ever hopeful for better solutions while acknowledging this is a giant leap from 50 years ago.
Have you asked your doctor your relapse risk, with and without AI?

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