1. < Breast Cancer

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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texas5 | @texas5 | Nov 29 10:11am
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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Hello!
Do you know how large the area of invasive was?
I had both on pathology report but is referrred to as invasive.

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lilacs777 | @lilacs777 | Nov 30 9:31am

I've been told that its safe to take up to 1000mg curcumin for the jointt pain from letrozole. Not sure if its safe to take with tamoxifen or Anastrozole. However if your onco approves it, curcumin has been well validated in studies to help with joint pain in general and inflammation, not to mention it regularly comes up as a good anticancer supplement in med studies too

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sequoia | @sequoia | Nov 30 1:27pm
In reply to @bjohnson511 "I’m on Anastrozole as well and having the same issues. Plus I can’t sleep! I started..." + (show)
@bjohnson511

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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@bjohnson511 I just read your post of last year. Checking in on you. How are you doing ? Blessings

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1 reply
bjohnson511 | @bjohnson511 | Nov 30 1:57pm
In reply to @sequoia "@bjohnson511 I just read your post of last year. Checking in on you. How are you..." + (show)
@sequoia

@bjohnson511 I just read your post of last year. Checking in on you. How are you doing ? Blessings

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I only took the pill for six months and then had to go off of it. That was about eight months ago. I still have a lot of joint pain and am tired. Taking lots of vitamins. Waiting for blood test results. Brito you as well.

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ksue3 | @ksue3 | Dec 1 9:44am

Is there anyone out there who has taken these AI's with less side effects? It is very discouraging that I developed the trigger thumbs after only 31/2 months on Anastrozole. Talking to Oncology on Monday. Even worse was my intestinal issues that prevented me from living a normal life of being out and about or traveling. I was naive about these drugs on their impact on someone age 84. I honestly thought I wouldn't have many problems.

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1 reply
ksue3 | @ksue3 | Dec 1 9:48am
In reply to @harmer "I have been on Letrezole for 2 months after total mastectomy of one breast, 6 months..." + (show)
@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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Did Cortisone injections help?

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Mentor
Miriam, Volunteer Mentor | @mir123 | Dec 1 9:50am
In reply to @ksue3 "Is there anyone out there who has taken these AI's with less side effects? It is..." + (show)
@ksue3

Is there anyone out there who has taken these AI's with less side effects? It is very discouraging that I developed the trigger thumbs after only 31/2 months on Anastrozole. Talking to Oncology on Monday. Even worse was my intestinal issues that prevented me from living a normal life of being out and about or traveling. I was naive about these drugs on their impact on someone age 84. I honestly thought I wouldn't have many problems.

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I've been on letrozole for 2 years without any side effects. I gather about half of people who take them don't have any problems, but of course the other half have side effects. When I started I told my oncologist that if the side effects were unpleasant I'd certainly consider stopping. Right now she & I both credit the drug for keeping my cancer at bay. Basically we each need to evaluate for ourselves if it is worth. Have you asked how much it helps rate of recurrence in your case?

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ksue3 | @ksue3 | Dec 1 10:02am

I am calling in on Monday to report on my 2 week drug rest and to ask questions. Thank you for your reply.

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